CDE Detailed Report
Disease: Mitochondrial Disease
Subdomain Name: General Health History
CRF: Diabetes-Related Medical History
Displaying 51 - 100 of 115
Subdomain Name: General Health History
CRF: Diabetes-Related Medical History
Displaying 51 - 100 of 115
| CDE ID | CDE Name | Variable Name | Definition | Short Description | Question Text | Permissible Values | Description | Data Type | Disease Specific Instructions | Disease Specific Reference | Population | Classification (e.g., Core) | Version Number | Version Date | CRF Name (CRF Module / Guidance) | Subdomain Name | Domain Name | Size | Input Restrictions | Min Value | Max Value | Measurement Type | External Id Loinc | External Id Snomed | External Id caDSR | External Id CDISC |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| C20249 | Family history diabetes relative type | FamHistDiabetesReltvTy | Relationship to the participant of the family member with diabetes | Relationship to the participant of the family member with diabetes | If yes, select the relation of the family member and the approximate age of onset | Mother;Father;Grandparent;Sibling | Mother;Father;Grandparent;Sibling | Alphanumeric | Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 1.10 | 2024-02-29 15:41:30.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Single Pre-Defined Value Selected |
3165810 | ||||||||
| C20294 | Urgent care clinic use not diabetes related past year count | UrgtCarClncUsNotDiabRelPstYrCt | The count of the times the participant used an after-hours or urgent care clinic for reasons unrelated to diabetes in the past 12 months | The count of the times the participant used an after-hours or urgent care clinic for reasons unrelated to diabetes in the past 12 months | How many times did the participant go to the After Hours/Urgent Care Clinic for: Reasons unrelated to diabetes | Numeric Values | Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 1.10 | 2024-02-29 15:42:12.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Free-Form Entry |
|||||||||||
| C20261 | Hypoglycemia severe loss of consciousness seizure post diabetes diagnosis indicator | HpoglySvrLoCSzrPstDibetDiagInd | The indicator of whether the participant has experienced severe hypoglycemia resulting in a loss of consciousness or seizure, in the time since their diagnosis of diabetes | The indicator of whether the participant has experienced severe hypoglycemia resulting in a loss of consciousness or seizure, in the time since their diagnosis of diabetes | Since diagnosis has the participant ever experienced severe hypoglycemia that resulted in passing out, losing consciousness, or seizure? | No;Yes | No;Yes | Alphanumeric |
If YES, answer questions on number of events and severe hypoglycemia in the past year |
Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 1.10 | 2024-02-29 15:41:40.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Single Pre-Defined Value Selected |
||||||||
| C20305 | Hospital admission not diabetes related past year total day count | HsptlAdmtNotDiabRelPstYrTtlDCt | The total duration, in days, of all of the participant's admissions to hospital for reasons not related to diabetes in the past 12 months | The total duration, in days, of all of the participant's admissions to hospital for reasons not related to diabetes in the past 12 months | # of days for all non-diabetes related admissions | Numeric Values | Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 1.10 | 2024-02-29 15:42:19.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Free-Form Entry |
0 | 366 | day | ||||||||
| C10539 | Diabetes first diagnosis age value | DiabetFrstDiagnosisAgeVal | Value representing the age, in years, at which the participant was first diagnosed with diabetes mellitus | Value representing the age, in years, at which the participant was first diagnosed with diabetes mellitus | How old was the participant at diagnosis? | Numeric Values |
For participants younger than 21 years, indicate both years and months. For those 21 and older, indicate years only. |
Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 3.10 | 2024-02-29 15:41:16.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Free-Form Entry |
year | |||||||||
| C20273 | Insulin premix current use status | InsulinPremixCurrentUseStat | Status indicating whether the participant currently uses premix insulin | Status indicatingwhether the participant currently uses premix insulin | Premix | Not used | Not used | Alphanumeric | Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 2.00 | 2024-02-29 15:41:50.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Single Pre-Defined Value Selected |
|||||||||
| C20284 | 911 call diabetes past year count | 911CallDiabetesPastYearCt | The count of the times that the participant called 911 (or their local equivalent) for reasons related to their diabetes in the past 12 months | The count of the times that the participant called 911 (or their local equivalent) for reasons related to their diabetes in the past 12 months | How many times was 911 called? | Numeric Values |
Outside of the United States, evaluate the question with respect to the direct-dial emergency number(s) available to the participant |
Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 1.10 | 2024-02-29 15:42:06.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Free-Form Entry |
||||||||||
| C20250 | Family history diabetes medical condition indicator | FamHistDiabMediclConditnInd | Indicator of whether a close family member (mother, father, sibling, or grandparent only) of the participant has had a history of diabetes | Indicator of whether a close family member (mother, father, sibling, or grandparent only) of the participant has had a history of diabetes | Does the participant have any family members (mother, father, sibling, or grandparent only) with history of diabetes? | Yes;No;Unknown | Yes;No;Unknown | Alphanumeric |
If YES, select the relation of the family member and approximate age of onset |
Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 1.10 | 2024-02-29 15:41:29.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Single Pre-Defined Value Selected |
3165788 | |||||||
| C20295 | Hospital admission past year indicator | HospitalAdmissionPastYearInd | The indicator of whether the participant was admitted to hospital in the past 12 months | The indicator of whether the participant was admitted to hospital in the past 12 months | In the last 12 months, has the participant had to be admitted to the hospital? | Yes;No;Unknown | Yes;No;Unknown | Alphanumeric |
If YES, complete the questions on number of hospital admissions and days |
Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 2.00 | 2024-02-29 15:42:13.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Single Pre-Defined Value Selected |
||||||||
| C20262 | Hypoglycemia severe loss consciousness seizure past year indicator | HypglycmiaSevrLOCSeizrPstYrInd | The indicator of whether the participant has experienced severe hypoglycemia resulting in a loss of consciousness or seizure, in the past 12 months | The indicator of whether the participant has experienced severe hypoglycemia resulting in a loss of consciousness or seizure, in the past 12 months | In the past 12 months, has the participant experienced severe hypoglycemia that resulted in passing out, losing consciousness, or seizure? | No;Yes | No;Yes | Alphanumeric |
If YES, answer how many times. |
Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 1.10 | 2024-02-29 15:41:41.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Single Pre-Defined Value Selected |
||||||||
| C20306 | Medical office visit diabetes past year count | MedicalOffVisitDiabtsPstYearCt | The count of times that the participant was seen by a health care provider at a medical office for reasons related to diabetes in the past 12 months | The count of times that the participant was seen by a health care provider at a medical office for reasons related to diabetes in the past 12 months | How many times has the participant seen a health care provider like a physician or nurse practitioner for an office visit for diabetes? | Numeric Values | Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 1.10 | 2024-02-29 15:42:20.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Free-Form Entry |
|||||||||||
| C16159 | Family history relative age at onset value | FmlyHistRltveAgeOnsetVal | Age the participant's relative experienced the onset of the disease or disorder | Age the participant's relative experienced the onset of the disease or disorder | Age of onset | Numeric Values | Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 3.10 | 2024-02-29 15:41:31.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Free-Form Entry |
year | ||||||||||
| C20274 | Insulin miss dose past two week count | InsulinMissDosePast2WeekCt | The count of insulin doses missed by the participant in the past two weeks | The count of insulin doses missed by the participant in the past two weeks | Number of missed injections or pump boluses in the past 2 weeks | Numeric Values | Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 1.10 | 2024-02-29 15:41:51.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Free-Form Entry |
|||||||||||
| C20285 | 911 call hypoglycemia past year count | 911CallHypoglycemiaPastYearCt | The count of the times that the participant called 911 (or their local equivalent) for hypoglycemia in the past 12 months | The count of the times that the participant called 911 (or their local equivalent) for hypoglycemia in the past 12 months | Number of times 911 was called for: Hypoglycemia (low blood sugars) | Numeric Values |
Outside of the United States, evaluate the question with respect to the direct-dial emergency number(s) available to the participant |
Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 1.10 | 2024-02-29 15:42:07.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Free-Form Entry |
||||||||||
| C20251 | Family history kidney disease severe parent type | FamHistKidneyDisSeverParentTyp | The type of the participant's parent with a history of kidney disease that required dialysis or kidney transplant | The type of the participant's parent with a history of kidney disease that required dialysis or kidney transplant | Indicate whether the participant's mother or father has a history of the following: Kidney disease that required dialysis or kidney transplant | Mother;Father;Both;Neither;Unknown | Mother;Father;Both;Neither;Unknown | Alphanumeric | Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 1.10 | 2024-02-29 15:41:33.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Single Pre-Defined Value Selected |
|||||||||
| C20296 | Hospital admission past year count | HospitalAdmissionPastYearCt | The count of times the participant was admitted to hospital in the past 12 months | The count of times the participant was admitted to hospital in the past 12 months | How many times was the participant admitted to the Hospital? | Numeric Values |
If yes, complete the following |
Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 1.10 | 2024-02-29 15:42:14.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Free-Form Entry |
||||||||||
| C20263 | Diabetic ketoacidosis emergency post diagnosis diabetes count | DKAEmrgncyPostDiagnosDiabetCt | The count of diabetic ketoacidosis (DKA) episodes requiring emergency or urgent treatment experienced by the participant in the time since their diagnosis of diabetes | The count of diabetic ketoacidosis (DKA) episodes requiring emergency or urgent treatment experienced by the participant in the time since their diagnosis of diabetes | If yes, # of events | Numeric Values | Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 1.10 | 2024-02-29 15:41:38.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Free-Form Entry |
|||||||||||
| C20307 | Medical office visit not diabetes related past year count | MedclOffVistNotDiabRelPastYrCt | The count of times that the participant was seen by a health care provider at a medical office for reasons not related to diabetes in the past 12 months | The count of times that the participant was seen by a health care provider at a medical office for reasons not related to diabetes in the past 12 months | How many times has the participant seen a health care provider like a physician or nurse practitioner for an office visit for other reasons? | Numeric Values | Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 1.10 | 2024-02-29 15:42:21.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Free-Form Entry |
|||||||||||
| C18241 | Diagnosis age value unit of measure | DiagnosAgeValUOM | Unit of measure for age value of the participant when initially diagnosed with disease/disorder | Unit of measure for age value of the participant when initially diagnosed with disease/disorder | How old was the participant at diagnosis? | years;Months;Years | years;Months (under 21 years);Years (21 years and older) | Alphanumeric |
For participants younger than 21 years, indicate both years and months. For those 21 and older, indicate years only. |
Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 4.00 | 2024-02-02 12:33:19.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Single Pre-Defined Value Selected |
||||||||
| C20275 | Insulin injection daily count | InsulinInjectiontDailyCt | The daily count of insulin injections used by the participant | The daily count of insulin injections used by the participant | If using injections, number of injections per day (average if not constant) | Numeric Values | Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 1.10 | 2024-02-29 15:41:51.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Free-Form Entry |
|||||||||||
| C20286 | 911 call hyperglycemia year count | 911CallHyperglycemiaPastYearCt | The count of the times that the participant called 911 (or their local equivalent) for hyperglycemia in the past 12 months | The count of the times that the participant called 911 (or their local equivalent) for hyperglycemia in the past 12 months | Number of times 911 was called for: Hyperglycemia (high blood sugars) | Numeric Values |
Outside of the United States, evaluate the question with respect to the direct-dial emergency number(s) available to the participant |
Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 1.10 | 2024-02-29 15:42:07.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Free-Form Entry |
||||||||||
| C20252 | Family history heart problem parent type | FamHistHeartProblemParentTyp | The type of the participant's parent with a history of heart attacks, heart failure or other heart problems | The type of the participant's parent with a history of heart attacks, heart failure or other heart problems | Indicate whether the participant's mother or father has a history of the following: Heart attacks, heart failure or other heart problems | Mother;Father;Both;Neither;Unknown | Mother;Father;Both;Neither;Unknown | Alphanumeric | Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 1.10 | 2024-02-29 15:41:33.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Single Pre-Defined Value Selected |
|||||||||
| C20297 | Hospital admission hypoglycemia past year count | HosptlAdmssnHypoglycmiaPstYrCt | The count of the times the participant was admitted to hospital for hypoglycemia in the past 12 months | The count of the times the participant was admitted to hospital for hypoglycemia in the past 12 months | How many times was the participant admitted to the Hospital for: Hypoglycemia (low blood sugars) | Numeric Values | Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 1.10 | 2024-02-29 15:42:14.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Free-Form Entry |
|||||||||||
| C20264 | Diabetic ketoacidosis emergency past year count | DKAEmeregncyPastYearCt | The count of diabetic ketoacidosis (DKA) episodes requiring emergency or urgent treatment experienced by the participant in the past 12 months | The count of diabetic ketoacidosis (DKA) episodes requiring emergency or urgent treatment experienced by the participant in the past 12 months | If yes, how many times? | Numeric Values | Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 1.10 | 2024-02-29 15:41:39.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Free-Form Entry |
|||||||||||
| C20308 | Dietician consult past year indicator | DieticianConsultPastYearInd | The indicator of whether the participant consulted a dietician in the past 12 months | The indicator of whether the participant consulted a dietician in the past 12 months | In the last 12 months, has the participant seen a dietician? | Yes;No;Unknown | Yes;No;Unknown | Alphanumeric |
If YES, complete the question on the number of times the participant has seen a dietician |
Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 2.00 | 2024-02-29 15:42:23.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Single Pre-Defined Value Selected |
||||||||
| C19670 | Family history diagnosis age unknown status | FmlyHistDiagnsisAgeUnkStat | Status related to whether the participant knows the age of the relative when diagnosed | Status related to whether the participantknows the age of the relative when diagnosed | Age of onset | Unknown | Unknown | Alphanumeric | Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 2.00 | 2024-02-29 15:41:31.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Single Pre-Defined Value Selected |
|||||||||
| C20276 | Insulin pen use indicator | InsulinPenUseInd | The indicator of whether the participant uses an insulin pen | The indicator of whether the participant uses an insulin pen | Does the participant use a Pen? | No;Yes;Unknown | No;Yes;Unknown | Alphanumeric | Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 1.10 | 2024-02-29 15:41:52.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Single Pre-Defined Value Selected |
|||||||||
| C20287 | 911 call diabetes related other past year count | 911CallDiabRelatdOthPastYearCt | The count of the times that the participant called 911 (or their local equivalent) for reasons related to their diabetes other than hypoglycemia or hyperglycemia in the past 12 months | The count of the times that the participant called 911 (or their local equivalent) for reasons related to their diabetes other than hypoglycemia or hyperglycemia in the past 12 months | Number of times 911 was called for: Other reasons related to diabetes | Numeric Values |
Outside of the United States, evaluate the question with respect to the direct-dial emergency number(s) available to the participant |
Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 1.10 | 2024-02-29 15:42:08.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Free-Form Entry |
||||||||||
| C20253 | Family history stroke parent type | FamHistStrokeParentTyp | The type of the participant's parent with a history of stroke | The type of the participant's parent with a history of stroke | Indicate whether the participant's mother or father has a history of the following: Stroke | Mother;Father;Both;Neither;Unknown | Mother;Father;Both;Neither;Unknown | Alphanumeric | Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 1.10 | 2024-02-29 15:41:34.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Single Pre-Defined Value Selected |
|||||||||
| C20298 | Hospital admission hyperglycemia past year count | HosptlAdmssnHyprglycmiaPstYrCt | The count of the times the participant was admitted to hospital for hyperglycemia in the past 12 months | The count of the times the participant was admitted to hospital for hyperglycemia in the past 12 months | How many times was the participant admitted to the Hospital for: Hyperglycemia (high blood sugars) | Numeric Values | Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 1.10 | 2024-02-29 15:42:16.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Free-Form Entry |
|||||||||||
| C20265 | Hypoglycemia severe loss consciousness seizure past year count | HypoglycmSevereLOCSeizrPstYrCt | The count of episodes of severe hypoglycemia resulting in loss of consciousness or seizure experienced by the participant in the past 12 months | The count of episodes of severe hypoglycemia resulting in loss of consciousness or seizure experienced by the participant in the past 12 months | If yes, how many times? | Numeric Values | Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 1.10 | 2024-02-29 15:41:42.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Free-Form Entry |
|||||||||||
| C20309 | Dietician consult past year count | DieticianConsultPastYearCt | The count of times that the participant consulted a dietician in the past 12 months | The count of times that the participant consulted a dietician in the past 12 months | How many times has the participant seen a dietician? | Numeric Values | Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 1.10 | 2024-02-29 15:42:23.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Free-Form Entry |
|||||||||||
| C20241 | Diabetes diagnosis indicator | DiabetesDiagnosisInd | The indicator of whether the participant has been diagnosed with diabetes | The indicator of whether the participant has been diagnosed with diabetes | Has the participant been diagnosed with diabetes? | No;Yes;Unknown | No;Yes;Unknown | Alphanumeric |
If YES, continue the rest of questions (Diabetes questions). |
Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Supplemental-Highly Recommended | 1.10 | 2024-02-29 15:41:12.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Single Pre-Defined Value Selected |
||||||||
| C20277 | Emergency room use past year indicator | EmrgncyRoomUsePastYearInd | The indicator of whether the participant has used the emergency room in the past 12 months | The indicator of whether the participant has used the emergency room in the past 12 months | In the last 12 months, has the participant had to use the Emergency Room? | Yes;No;Unknown | Yes;No;Unknown | Alphanumeric |
If YES, complete the questions on number of times the participant went to the Emergency Room |
Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 2.00 | 2024-02-29 15:42:02.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Single Pre-Defined Value Selected |
||||||||
| C20288 | 911 call non-diabetes related past year count | 911CallNonDiabRelatdPastYearCt | The count of the times that the participant called 911 (or their local equivalent) for reasons unrelated to their diabetes in the past 12 months | The count of the times that the participant called 911 (or their local equivalent) for reasons unrelated to their diabetes in the past 12 months | Number of times 911 was called for: Reasons unrelated to diabetes | Numeric Values |
Outside of the United States, evaluate the question with respect to the direct-dial emergency number(s) available to the participant |
Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 1.10 | 2024-02-29 15:42:09.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Free-Form Entry |
||||||||||
| C20254 | Family history high cholesterol parent type | FamHistHiCholesterolParentTyp | The type of the participant's parent with a history of high cholesterol | The type of the participant's parent with a history of high cholesterol | Indicate whether the participant's mother or father has a history of the following: High cholesterol | Mother;Father;Both;Neither;Unknown | Mother;Father;Both;Neither;Unknown | Alphanumeric | Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 1.10 | 2024-02-29 15:41:35.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Single Pre-Defined Value Selected |
|||||||||
| C20299 | Hospital admission other diabetes related past year count | HospitlAdmssnOthDiabRelPstYrCt | The count of the times the participant was admitted to hospital for diabetes-related reasons other than hypoglycemia or hyperglycemia in the past 12 months | The count of the times the participant was admitted to hospital for diabetes-related reasons other than hypoglycemia or hyperglycemia in the past 12 months | How many times was the participant admitted to the Hospital for: Other reasons related to diabetes | Numeric Values | Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 1.10 | 2024-02-29 15:42:17.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Free-Form Entry |
|||||||||||
| C20266 | Hypoglycemia severe loss consciousness seizure post diabetes diagnosis count | HypoglySvrLOCSezrPstDiabDiagCt | The count of episodes of severe hypoglycemia resulting in loss of consciousness or seizure experienced by the participant in the time since they were diagnosed with diabetes | The count of episodes of severe hypoglycemia resulting in loss of consciousness or seizure experienced by the participant in the time since they were diagnosed with diabetes | If yes, # of events | Numeric Values | Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 1.10 | 2024-02-29 15:41:40.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Free-Form Entry |
|||||||||||
| C20242 | Diabetes clinical symptom presentation diagnosis type | DiabClinSympPresentDiagTyp | Clinical symptoms participant showed at presentation when diagnosed with diabetes | Clinical symptoms participant showed at presentation when diagnosed with diabetes | Which of these was present at diagnosis? Clinical symptoms | Excessive thirst or urination;Weight loss;Fatigue | Excessive thirst or urination;Weight loss (or failure to gain weight in children and adolescents);Fatigue | Alphanumeric |
Choose all that apply |
Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 2.00 | 2024-02-29 15:41:17.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Multiple Pre-Defined Values Selected |
||||||||
| C20278 | Emergency room use past year count | EmergencyRoomUsePastYearCt | The count of the times the participant used the emergency room in the past 12 months | The count of the times the participant used the emergency room in the past 12 months | How many times did the participant go to the Emergency Room? | Numeric Values | Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 1.10 | 2024-02-29 15:42:02.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Free-Form Entry |
|||||||||||
| C20289 | Urgent care clinic use past year indicator | UrgentCareUsePastYearInd | The indicator of whether the participant has used after-hours or urgent care clinic other than the emergency room in the past 12 months | The indicator of whether the participant has used after-hours or urgent care clinic other than the emergency room in the past 12 months | In the last 12 months, has the participant had to use an After Hours/Urgent Care Clinic (other than an Emergency Room)? | Yes;No;Unknown | Yes;No;Unknown | Alphanumeric |
If YES, complete the questions on number of times the participant had to use an After Hours/Urgent Care Clinic (other than an Emergency Room) |
Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 2.00 | 2024-02-29 15:42:09.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Single Pre-Defined Value Selected |
||||||||
| C20255 | Family history hypertension parent type | FamHistHypertensionParentTyp | The type of the participant's parent with a history of hypertension | The type of the participant's parent with a history of hypertension | Indicate whether the participant's mother or father has a history of the following: High blood pressure | Mother;Father;Both;Neither;Unknown | Mother;Father;Both;Neither;Unknown | Alphanumeric | Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 1.10 | 2024-02-29 15:41:35.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Single Pre-Defined Value Selected |
|||||||||
| C20300 | Hospital admission not diabetes related past year count | HospitlAdmssnNotDiabRelPstYrCt | The count of the times the participant was admitted to hospital for reasons unrelated to diabetes in the past 12 months | The count of the times the participant was admitted to hospital for reasons unrelated to diabetes in the past 12 months | How many times was the participant admitted to the Hospital for: Other reasons unrelated to diabetes | Numeric Values | Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 1.10 | 2024-02-29 15:42:18.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Free-Form Entry |
|||||||||||
| C20267 | Blood glucose test daily frequency | BloodGlucoseTestDailyFreq | The daily frequency with which the participant checks their blood glucose | The daily frequency with which the participant checks their blood glucose | If the participant uses fingersticks, approximately how many times a day do they check their blood sugar? | Numeric Values | Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 1.10 | 2024-02-29 15:41:43.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Free-Form Entry |
times per day | ||||||||||
| C20243 | Diabetes laboratory diagnosis type | DiabLabDiagnosisTyp | Laboratory indications present at diagnosis of diabetes | Laboratory indications present at diagnosis of diabetes | Which of these was present at diagnosis? Laboratory diagnosis | Elevated fasting blood sugar;Elevated random blood sugar;Abnormal glucose tolerance testing;Elevated hemoglobin A1c;Glucose in the urine;Any positive anti-pancreatic auto-antibody laboratory tests;Diabetic ketoacidosis | Elevated fasting blood sugar;Elevated random blood sugar;Abnormal glucose tolerance testing;Elevated hemoglobin A1c;Glucose in the urine;Any positive anti-pancreatic auto-antibody laboratory tests;Diabetic ketoacidosis | Alphanumeric |
Choose all that apply |
Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 2.00 | 2024-02-29 15:41:18.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Multiple Pre-Defined Values Selected |
||||||||
| C20279 | Emergency room use hypoglycemia past year count | EmrgncyRmUseHypoglycmiaPstYrCt | The count of the times the participant used the emergency room for hypoglycemia in the past 12 months | The count of the times the participant used the emergency room for hypoglycemia in the past 12 months | Number of times the participant went to the Emergency Room for: Hypoglycemia (low blood sugars) | Numeric Values | Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 1.10 | 2024-02-29 15:42:03.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Free-Form Entry |
|||||||||||
| C20290 | Urgent care clinic use past year count | UrgentCareClinicUsePastYearCt | The count of the times the participant used an after-hours or urgent care clinic other than the emergency room in the past 12 months | The count of the times the participant used an after-hours or urgent care clinic other than the emergency room in the past 12 months | How many times did the participant go to the After Hours/Urgent Care Clinic? | Numeric Values | Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 1.10 | 2024-02-29 15:42:10.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Free-Form Entry |
|||||||||||
| C20257 | Medication reduce blood sugar prior diagnosis diabetes indicator | MedsRdceBldSgrPriorDiagDbtsInd | The indicator of whether the participant had been on medication to reduce blood sugar levels prior to diagnosis of the diabetes | The indicator of whether the participant had been on medication to reduce blood sugar levels prior to diagnosis of the diabetes | Was the participant on medications to lower blood sugar prior to diagnosis of diabetes? | No;Yes;Unknown | No;Yes;Unknown | Alphanumeric |
If YES, select the medication |
Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 2.00 | 2024-02-29 15:41:36.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Single Pre-Defined Value Selected |
||||||||
| C20301 | Medical office visit past year indicator | MedicalOfficeVisitPastYearInd | The indicator of whether the participant was seen by a health care provider at a medical office in the past 12 months | The indicator of whether the participant was seen by a health care provider at a medical office in the past 12 months | In the last 12 months, has the participant seen a health care provider like a physician or nurse practitioner for an office visit? | Yes;No;Unknown | Yes;No;Unknown | Alphanumeric |
If YES, complete the questions on the number of times the participant has seen a health care provider like a physician or nurse practitioner for an office visit |
Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 2.00 | 2024-02-29 15:42:19.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Single Pre-Defined Value Selected |
||||||||
| C20268 | Insulin current use indicator | InsulinCurrentUseInd | The indicator of whether the participant currently uses insulin | The indicator of whether the participant currently uses insulin | Is the participant currently on insulin? | No;Yes | No;Yes | Alphanumeric | Whittaker RG, Schaefer AM, McFarland R, Taylor RW, Walker M, Turnbull DM. Prevalence and progression of diabetes in mitochondrial disease. Diabetologia. 2007 Oct;50(10):2085-9.<br /><br />Pediatric Diabetes Consortium. The pediatric diabetes consortium: improving care of children with type 1 diabetes through collaborative research. Diabetes Technol Ther. 2010 Sep;12(9):685-8.<br /><br />Tamaroff J, DeDio A, Wade K, Wells M, Park C, Leavens K, Rummey C, Kelly A, Lynch DR, McCormack SE. Friedreich's Ataxia related Diabetes: Epidemiology and management practices. Diabetes Res Clin Pract. 2022 Apr;186:109828. | Adult;Pediatric | Exploratory | 1.10 | 2024-02-29 15:41:44.0 | Diabetes-Related Medical History | General Health History | Participant History and Family History |
Single Pre-Defined Value Selected |
