CDE Detailed Report
Subdomain Name: General Health History
CRF: Family History - Affected Relatives and Pedigree
Displaying 1 - 33 of 33
| 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 |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| C14144 | Family history assessment date | FamlyHistAssmtDate | Date family history was collected from the participant/ subject, family member/friend, and/or the medical record | Date family history was collected from the participant/ subject, family member/friend, and/or the medical record | Date pedigree taken | Date or Date & Time |
Record the date/time according to the ISO 8601, the International Standard for the representation of dates and times (http://www.iso.org/iso/home.html). The date/time should be recorded to the level of granularity known (e.g., year, year and month, complete date plus hours and minutes, etc.). |
No references available | Adult;Pediatric | Supplemental | 3.00 | 2013-06-11 00:00:00.0 | Family History - Affected Relatives and Pedigree | General Health History | Participant History and Family History |
Free-Form Entry |
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| 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 at onset of MS | Numeric Values |
Record age of MS onset in years. Complete for all relatives diagnosed with MS. |
No references available | Adult;Pediatric | Supplemental | 3.10 | 2024-02-29 15:41:31.0 | Family History - Affected Relatives and Pedigree | General Health History | Participant History and Family History |
Free-Form Entry |
year | |||||||||
| C18678 | Family history medical condition type other text | FamHistMedclCondTypOTH | The free-text field related to 'Family history medical condition type', specifying other text. Type of medical condition or health related event for which the family history is taken | The free-text field related to 'Family history medical condition type', specifying other text. Type of medical condition or health related event for which the family history is taken | Other, specify | Alphanumeric |
This CDE should be collected along with the "Family history medical condition indicator". It is strongly recommended that the immediate family history of Friedreich's ataxia and ataxia be collected but collecting the family history of the other conditions is optional. Answer for first and second degree blood relatives. The majority of the medical conditions are Supplemental with the exception of the following which are Core: Developmental Delays; Epilepsy (pediatric only); Seizures without epilepsy diagnosis (pediatric only); Heart Disease; Muscle Disease; Peripheral Neuropathy For MS: The value for this CDE is "multiple sclerosis (MS)". This CDE should be collected along with the "Family history medical condition indicator". |
Krassioukov A, Alexander MS, Karlsson AK, Donovan W, Mathias CJ, Biering-SØrensen F. International spinal cord injury cardiovascular function basic data set. Spinal Cord. 2010 Aug;48(8):586-90. | Adult;Pediatric | Supplemental | 1.10 | 2024-02-29 15:42:35.0 | Family History - Affected Relatives and Pedigree | General Health History | Participant History and Family History | 4000 |
Free-Form Entry |
3165585 | ||||||||
| C16143 | Parents biologically related type | PrntsBioRltdTyp | Type of relation of the biologically related parents | Type of relation of the biologically related parents | Relationship | First cousin;Niece;Other, specify | First cousin;Niece;Other, specify | Alphanumeric | No references available | Adult;Pediatric | Supplemental | 3.00 | 2013-06-11 00:00:00.0 | Family History - Affected Relatives and Pedigree | General Health History | Participant History and Family History |
Single Pre-Defined Value Selected |
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| C16206 | Family history gender type | FmlyHistGendTyp | Reported gender of the relative. Gender is the socially constructed identity of sex | Reported gender of the relative. Gender is the socially constructed identity of sex | Gender | Female;Male | Female;Male | Alphanumeric |
Complete for each relative diagnosed with MS where not readily apparent. Choose one. |
The NIH Guidelines on Inclusion of Women and Minorities as Subjects in Clinical Research: The Office of Management and Budget (OMB) Directive No. 15 - http://grants.nih.gov/grants/funding/women_min/women_min.htm . Prognostic value of demographic characteristics in traumatic brain injury: results from the IMPACT study. Mushkudiani et al J Neurotrauma 2007;24:329-37. Do women fare worse: a meta-analysis of gender differences in traumatic brain injury outcome. Farace et al, J Neurosurg 2000;93:539-545. | Adult;Pediatric | Supplemental | 3.00 | 2013-06-11 00:00:00.0 | Family History - Affected Relatives and Pedigree | General Health History | Participant History and Family History |
Single Pre-Defined Value Selected |
2200604 | |||||||
| C18679 | Family history medical condition relative type other text | FamHistMedclCondReltvTypOTH | The free-text field related to 'Family history medical condition relative type', specifying other text. Relationship of the family member or ancestor with the medical condition or health related event to the participant | The free-text field related to 'Family history medical condition relative type', specifying other text. Relationship of the family member or ancestor with the medical condition or health related event to the participant | Other, specify | Alphanumeric |
Answer the family history items for each relative type. Select the relationship from the options of the family members listed. Record/choose more than one family member, if applicable. For MS: Use this element along with "Family history relative type biological sample in repository indicator" (C08001) to record which relatives had a DNA sample banked in a repository. For HD: If no first degree relatives have been diagnosed with HD, do not complete family history for second degree relatives. If either or both of the participant's/subject's parents have been diagnosed with HD, complete family history for second degree relatives by considering only the parent(s) diagnosed with HD to determine maternal/paternal relationship. |
Krassioukov A, Alexander MS, Karlsson AK, Donovan W, Mathias CJ, Biering-SØrensen F. International spinal cord injury cardiovascular function basic data set. Spinal Cord. 2010 Aug;48(8):586-90. | Adult;Pediatric | Supplemental | 1.10 | 2024-02-29 15:42:37.0 | Family History - Affected Relatives and Pedigree | General Health History | Participant History and Family History | 4000 |
Free-Form Entry |
3165810 | ||||||||
| C16145 | Family history relative birth date | FmlyHistReltvBirthDate | The date of birth of a related family members to the participant/subject | The date of birth of a relative to a participant/subject | Date of Birth | Date or Date & Time |
Complete for all relatives diagnosed with MS. Record the date/time according to the ISO 8601, the International Standard for the representation of dates and times (http://www.iso.org/iso/home.html). The date/time should be recorded to the level of granularity known (e.g., year, year and month, complete date plus hours and minutes, etc.). |
No references available | Adult;Pediatric | Supplemental | 3.00 | 2013-06-11 00:00:00.0 | Family History - Affected Relatives and Pedigree | General Health History | Participant History and Family History |
Free-Form Entry |
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| C17450 | MS first cousin diagnosis total count | MS1stCousinDiagTtlCt | The total number of first cousins that were diagnosed with Multiple Sclerosis | The total number of first cousins that were diagnosed with Multiple Sclerosi | Specify total number of cousins | Numeric Values | No references available | Adult;Pediatric | Supplemental | 3.00 | 2013-06-11 00:00:00.0 | Family History - Affected Relatives and Pedigree | General Health History | Participant History and Family History |
Free-Form Entry |
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| C00720 | Family history medical condition type | FamHistMedclCondTyp | Type of medical condition or health related event for which the family history is taken | Type of medical condition or health related event for which the family history is taken | Condition | Alphanumeric |
This CDE should be collected along with the "Family history medical condition indicator". It is strongly recommended that the immediate family history of Friedreich's ataxia and ataxia be collected but collecting the family history of the other conditions is optional. Answer for first and second degree blood relatives. The majority of the medical conditions are Supplemental with the exception of the following which are Core: Developmental Delays; Epilepsy (pediatric only); Seizures without epilepsy diagnosis (pediatric only); Heart Disease; Muscle Disease; Peripheral Neuropathy For MS: The value for this CDE is "multiple sclerosis (MS)". This CDE should be collected along with the "Family history medical condition indicator". |
Krassioukov A, Alexander MS, Karlsson AK, Donovan W, Mathias CJ, Biering-SØrensen F. International spinal cord injury cardiovascular function basic data set. Spinal Cord. 2010 Aug;48(8):586-90. | Adult;Pediatric | Supplemental | 4.00 | 2024-02-29 15:42:34.0 | Family History - Affected Relatives and Pedigree | General Health History | Participant History and Family History |
Multiple Pre-Defined Values Selected |
3165585 | |||||||||
| C19051 | Parents biologically related other text | PrntsBioRltdOTH | The free-text field related to 'Parents biologically related type' specifying other text. Type of relation of the biologically related parents | The free-text field related to 'Parents biologically related type' specifying other text. Type of relation of the biologically related parents | Other, specify | Alphanumeric | No references available | Adult;Pediatric | Supplemental | 3.00 | 2013-06-11 00:00:00.0 | Family History - Affected Relatives and Pedigree | General Health History | Participant History and Family History | 4000 |
Free-Form Entry |
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| C16146 | Family history relative age at death value | FmlyHistReltvAgeDeathVal | Age at death of the participant/subject's relative, if applicable | Age at death of the participant/subject's relative, if applicable | Age at Death | Numeric Values |
Age should be captured in years. Complete for all relatives diagnosed with MS. Leave age at death blank and check Not Applicable if relative is still living. |
No references available | Adult;Pediatric | Supplemental | 3.00 | 2013-06-11 00:00:00.0 | Family History - Affected Relatives and Pedigree | General Health History | Participant History and Family History |
Free-Form Entry |
0 | 130 | year | |||||||
| C17451 | MS aunt diagnosis total count | MSAuntDiagTtlCt | The total number of aunts that were diagnosed with Multiple Sclerosis | The total number of aunts that were diagnosed with Multiple Sclerosi | Specify total number of aunts with MS | Numeric Values | No references available | Adult;Pediatric | Supplemental | 3.00 | 2013-06-11 00:00:00.0 | Family History - Affected Relatives and Pedigree | General Health History | Participant History and Family History |
Free-Form Entry |
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| C00721 | Family history medical condition indicator | FamHistMedclCondInd | Indicator of whether a family member or first and second degree blood relatives of the participant has had a history of the particular medical condition or health related event | Indicator of whether a family member or first and second degree blood relatives of the participant has had a history of the particular medical condition or health related event | Condition | Yes;No;Unknown | Yes;No;Unknown | Alphanumeric |
If there is a history of this condition in the first or second degree family, indicate YES, otherwise choose NO. For MS: Choose one based on whether there is a history of MS for the relative type. |
No references available | Adult;Pediatric | Supplemental | 4.00 | 2024-02-29 15:42:36.0 | Family History - Affected Relatives and Pedigree | General Health History | Participant History and Family History |
Single Pre-Defined Value Selected |
3165788 | |||||||
| C16147 | Family history relative death cause text | FmlyHistRltvDeathCauseTxt | Cause of death of the participant/subject's relative, if applicable | Cause of death of the participant/subject's relative, if applicable | Cause of Death | Alphanumeric |
Complete for all relatives diagnoses with MS. If relative is still living, leave cause of death blank and check Not Applicable |
No references available | Adult;Pediatric | Supplemental | 3.00 | 2013-06-11 00:00:00.0 | Family History - Affected Relatives and Pedigree | General Health History | Participant History and Family History | 255 |
Free-Form Entry |
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| C17452 | MS aunt uncle diagnosis indicator | MSAuntUncleDiagInd | The indicator of whether any aunts and/or uncles were diagnosed with Multiple Sclerosis | The indicator of whether any aunts and/or uncles were diagnosed with Multiple Sclerosi | Do you have any aunts and/or uncles who have been diagnosed with MS | Yes;No;Unknown;Not applicable | Yes;No;Unknown;Not applicable | Alphanumeric |
Yes, medical record confirmed: Confirmed by medical records or autopsy report. Study design/diagnostic criteria choice can dictate degree of certainty to call an individual affected. |
No references available | Adult;Pediatric | Supplemental | 3.00 | 2013-06-11 00:00:00.0 | Family History - Affected Relatives and Pedigree | General Health History | Participant History and Family History |
Single Pre-Defined Value Selected |
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| C00722 | Family history medical condition relative type | FamHistMedclCondReltvTyp | Relationship of the family member or ancestor with the medical condition or health related event to the participant | Relationship of the family member or ancestor with the medical condition or health related event to the participant | Relationship | Mother;Father;Full sibling;Half sibling;Child;Maternal grandmother;Paternal grandmother;Maternal grandfather;Paternal grandfather;Maternal aunt;Paternal aunt;Maternal uncle;Paternal uncle;Maternal niece/nephew;Paternal niece/nephew;Grandchild;Other, specify;Maternal cousin;Paternal cousin;Great-grandchild | Mother;Father;Full sibling;Half sibling;Child;Maternal grandmother;Paternal grandmother;Maternal grandfather;Paternal grandfather;Maternal aunt;Paternal aunt;Maternal uncle;Paternal uncle;Maternal niece/nephew;Paternal niece/nephew;Grandchild;Other, specify;Maternal cousin;Paternal cousin;Great-grandchild | Alphanumeric |
Answer the family history items for each relative type. Select the relationship from the options of the family members listed. Record/choose more than one family member, if applicable. For MS: Use this element along with "Family history relative type biological sample in repository indicator" (C08001) to record which relatives had a DNA sample banked in a repository. For HD: If no first degree relatives have been diagnosed with HD, do not complete family history for second degree relatives. If either or both of the participant's/subject's parents have been diagnosed with HD, complete family history for second degree relatives by considering only the parent(s) diagnosed with HD to determine maternal/paternal relationship. |
Krassioukov A, Alexander MS, Karlsson AK, Donovan W, Mathias CJ, Biering-SØrensen F. International spinal cord injury cardiovascular function basic data set. Spinal Cord. 2010 Aug;48(8):586-90. | Adult;Pediatric | Supplemental | 4.00 | 2024-03-18 15:21:17.0 | Family History - Affected Relatives and Pedigree | General Health History | Participant History and Family History |
Multiple Pre-Defined Values Selected |
3165810 | |||||||
| C16148 | Biological parent twin indicator | BioPrntTwinInd | Indicates whether the biological parent is a twin | Indicates whether the biological parent is a twin | Is the parent a twin | Yes;No;Unknown | Yes;No;Unknown | Alphanumeric |
Complete for both biological parents |
No references available | Adult;Pediatric | Supplemental | 3.00 | 2013-06-11 00:00:00.0 | Family History - Affected Relatives and Pedigree | General Health History | Participant History and Family History |
Single Pre-Defined Value Selected |
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| C17453 | MS relative description text | MSReltvDescrText | The free-text field for describing the relationship of relative with Multiple Sclerosis | The free-text field for describing the relationship of relative with Multiple Sclerosi | Relationship Details | Alphanumeric | No references available | Adult;Pediatric | Supplemental | 3.00 | 2013-06-11 00:00:00.0 | Family History - Affected Relatives and Pedigree | General Health History | Participant History and Family History | 255 |
Free-Form Entry |
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| C08080 | Twin sibling indicator | TwinSiblingInd | Indicator of whether the participant/subject has a twin brother or sister | Indicator of whether the participant/subject has a twin brother or sister | Are you a twin | Yes;No;Unknown | Yes;No;Unknown | Alphanumeric |
Choose one |
No references available | Adult;Pediatric | Supplemental | 3.00 | 2013-07-22 09:34:41.527 | Family History - Affected Relatives and Pedigree | General Health History | Participant History and Family History |
Single Pre-Defined Value Selected |
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| C16149 | Biological parent twin type | BioPrntTwinTyp | Type of twin the biological parent has | Type of twin the biological parent has | Type of twin | Identical;Not identical (fraternal);Unknown | i.e., monozygotic;i.e., dizygotic; | Alphanumeric |
Complete for both biological parents. Only answer if "Is this parent a twin?" is answered Yes |
No references available | Adult;Pediatric | Supplemental | 3.00 | 2013-06-11 00:00:00.0 | Family History - Affected Relatives and Pedigree | General Health History | Participant History and Family History |
Single Pre-Defined Value Selected |
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| C17454 | MS sibling diagnosis indicator | MSSiblingDiagInd | The indicator of whether a sibling was diagnosed with Multiple Sclerosis | The indicator of whether a sibling was diagnosed with Multiple Sclerosi | Have any of your siblings been diagnosed with MS (yes/no/unknown) | Yes;No;Unknown | Yes;No;Unknown | Alphanumeric | No references available | Adult;Pediatric | Supplemental | 3.00 | 2013-06-11 00:00:00.0 | Family History - Affected Relatives and Pedigree | General Health History | Participant History and Family History |
Single Pre-Defined Value Selected |
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| C08081 | Twin sibling type | TwinSiblingTyp | Type of twin the participant/subject has | Type of twin the participant/subject has | What type of twin | Identical;Not identical (fraternal) | Identical;Not identical (fraternal) | Alphanumeric |
Only answer if "Are you a twin?" is answered Yes. Choose all that apply |
No references available | Adult;Pediatric | Supplemental | 3.00 | 2013-07-22 09:34:41.527 | Family History - Affected Relatives and Pedigree | General Health History | Participant History and Family History |
Single Pre-Defined Value Selected |
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| C16150 | Adopted age value | AdoptedAgeVal | Age at time of adoption if participant/subject was adopted | Age at time of adoption if participant/subject was adopted | Age at time of adoption | Numeric Values |
Record age at time of adoption. Only answered if "Yes" is answered for "Are you adopted?" |
No references available | Adult;Pediatric | Supplemental | 3.00 | 2013-06-11 00:00:00.0 | Family History - Affected Relatives and Pedigree | General Health History | Participant History and Family History |
Free-Form Entry |
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| C17455 | MS spouse diagnosis indicator | MSSpouseDiagInd | The indicator of whether a spouse was diagnosed with Multiple Sclerosis | The indicator of whether a spouse was diagnosed with Multiple Sclerosi | Has your spouse been diagnosed with MS (yes/no/unknown/not applicable) | Yes;No;Unknown;Not applicable | Yes;No;Unknown;Not applicable | Alphanumeric |
Yes, medical record confirmed: Confirmed by medical records or autopsy report. Study design/diagnostic criteria choice can dictate degree of certainty to call an individual affected. |
No references available | Adult | Supplemental | 3.00 | 2013-06-11 00:00:00.0 | Family History - Affected Relatives and Pedigree | General Health History | Participant History and Family History |
Single Pre-Defined Value Selected |
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| C08085 | Sibling alive indicator | SiblingAliveInd | Indicator of whether the participant's/subject's sibling is still living | Indicator of whether the participant's/subject's sibling is still living | Is your twin alive | Yes;No;Unknown | Yes;No;Unknown | Alphanumeric |
Choose one |
No references available | Adult;Pediatric | Supplemental | 3.00 | 2013-07-22 09:34:41.527 | Family History - Affected Relatives and Pedigree | General Health History | Participant History and Family History |
Single Pre-Defined Value Selected |
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| C16151 | Child adopted before age one indicator | ChildAdptdBeforeAgeOneInd | Indicates whether participant/subject has any adopted children who were adopted before one year of age | Indicates whether participant/subject has any adopted children who were adopted before one year of age | Do you have any adopted children who were adopted before age 1 | Yes;No;Unknown | Yes;No;Unknown | Alphanumeric |
Choose one |
No references available | Adult;Pediatric | Supplemental | 3.00 | 2013-06-11 00:00:00.0 | Family History - Affected Relatives and Pedigree | General Health History | Participant History and Family History |
Single Pre-Defined Value Selected |
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| C17456 | MS uncle diagnosis total count | MSUncleDiagTtlCt | The total number of uncles that were diagnosed with Multiple Sclerosis | The total number of uncles that were diagnosed with Multiple Sclerosi | Specify total number of uncles with MS | Numeric Values | No references available | Adult;Pediatric | Supplemental | 3.00 | 2013-06-11 00:00:00.0 | Family History - Affected Relatives and Pedigree | General Health History | Participant History and Family History |
Free-Form Entry |
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| C10813 | Adopted indicator | AdoptedInd | Indicator of whether the participant was adopted | Indicator of whether the participant was adopted | Are you adopted | Yes;No;Unknown | Yes;No;Unknown | Alphanumeric |
Choose one |
No references available | Adult;Pediatric | Supplemental | 3.10 | 2024-02-29 15:42:33.0 | Family History - Affected Relatives and Pedigree | General Health History | Participant History and Family History |
Single Pre-Defined Value Selected |
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| C16152 | Sibling adopted before age one indicator | SiblingAdptdBeforeAgeOneInd | Indicates whether participant/subject has any adopted siblings who were adopted before one year of age | Indicates whether participant/subject has any adopted siblings who were adopted before one year of age | Do you have any adopted siblings who were adopted before age 1 | Yes;No;Unknown | Yes;No;Unknown | Alphanumeric |
Choose one |
No references available | Adult;Pediatric | Supplemental | 3.00 | 2013-06-11 00:00:00.0 | Family History - Affected Relatives and Pedigree | General Health History | Participant History and Family History |
Single Pre-Defined Value Selected |
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| C17458 | MS first cousin diagnosis indicator | MS1stCousinDiagInd | The indicator of whether any first cousins were diagnosed with Multiple Sclerosis | The indicator of whether any first cousins were diagnosed with Multiple Sclerosi | Do you have any first cousins who have been diagnosed with MS | Yes;No;Unknown | Yes;No;Unknown | Alphanumeric |
Yes, medical record confirmed: Confirmed by medical records or autopsy report. Study design/diagnostic criteria choice can dictate degree of certainty to call an individual affected. |
No references available | Adult;Pediatric | Supplemental | 3.00 | 2013-06-11 00:00:00.0 | Family History - Affected Relatives and Pedigree | General Health History | Participant History and Family History |
Single Pre-Defined Value Selected |
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| C10814 | Parents biologically related indicator | ParntsBioRltdInd | The indicator whether the subject's/participant's parents are biologically related | The indicator whether the subject's/participant's parents are biologically relat | Is your biological mother a relative of your biological father | Yes;No;Unknown | Yes;No;Unknown | Alphanumeric |
Choose one |
No references available | Adult;Pediatric | Supplemental | 3.00 | 2013-07-22 16:57:17.79 | Family History - Affected Relatives and Pedigree | General Health History | Participant History and Family History |
Single Pre-Defined Value Selected |
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| C16153 | Family history relative type with MS number | FmlyHistRltveTypMSNum | For the specified relative type, the total number of relatives diagnosed with multiple sclerosis (MS) | For the specified relative type, the total number of relatives diagnosed with multiple sclerosis (MS) | Sib # | Numeric Values |
Complete for all relative types that have at least one MS diagnosis. |
No references available | Adult;Pediatric | Supplemental | 3.00 | 2013-06-11 00:00:00.0 | Family History - Affected Relatives and Pedigree | General Health History | Participant History and Family History |
Free-Form Entry |
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| C17459 | MS offspring diagnosis indicator | MSOffspringDiagInd | The indicator of whether children were diagnosed with Multiple Sclerosis | The indicator of whether children were diagnosed with Multiple Sclerosi | Do you have any children who have been diagnosed with MS | Yes;No;Unknown | Yes;No;Unknown | Alphanumeric |
Yes, medical record confirmed: Confirmed by medical records or autopsy report. Study design/diagnostic criteria choice can dictate degree of certainty to call an individual affected. |
No references available | Adult | Supplemental | 3.00 | 2013-06-11 00:00:00.0 | Family History - Affected Relatives and Pedigree | General Health History | Participant History and Family History |
Single Pre-Defined Value Selected |
