CRF Library

The CRF Library (a.k.a., Library of Case Report Form Modules and Guidelines) contains the NINDS CRF Modules (i.e., form templates) and various guideline documents that have been created through the NINDS CDE Project. Users are able to search the Library to find CRF Modules and Guidelines of interest. For best results, clear form between searches.

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Download results by clicking the checkboxes on the far right side of the table. Select the header checkbox to select all CRFs listed on the first page. Then choose 'Download Table Contents into Zip File' from the Choose an operation dropdown menu.
CRF Module/Guidance Description CDEs Version # Version Date Disease Name Sub Disease Name
Addenbrooke?s Cognitive Examination-III (ACE-III) N/A 1.00 2017-03-16 17:40:55.0 Parkinson's Disease Parkinson's Disease
Alzheimer's Disease Assessment Scale-Cognition (ADAS-cog) N/A 1.00 2013-11-14 00:00:00.0 Parkinson's Disease Parkinson's Disease
Alzheimer's Disease Cooperative Study-Clinical Global Impression of Change (ADCS-CGIC) N/A 1.00 2013-11-14 00:00:00.0 Parkinson's Disease Parkinson's Disease
Apathy Scale (AS)

The Apathy Scale is an abridged version of the Apathy Evaluation Scale (Marin, 1990). The AS consists of 14 items regarding different dimensions of apathetic behavior. The score for each item ranges from 0 to 3. Rating of each item is based on a semi-structured interview: each question should be read by the examiner, and the patient is provided with the four possible answers.

CDE Details 1.00 2012-06-25 00:00:00.0 Parkinson's Disease Parkinson's Disease
Beck Depression Inventory II (BDI-II)

The BDI-II was developed in 1996 and was derived from the BDI. The 21-item survey is self-administered and is scored on a scale of 0-3 in a list of four statements arranged in increasing severity about a particular symptom of depression, bringing the BDI-II into alignment with DSM-IV criteria.

CDE Details 1.00 2012-01-16 00:00:00.0 Parkinson's Disease Parkinson's Disease
Belastungsfrageboge Parkinson kurzversion (BELA-P-k) N/A 1.00 2013-11-14 00:00:00.0 Parkinson's Disease Parkinson's Disease
Berlin Questionnaire

Contains data elements that assess that participant/subject's risk for having sleep apnea. (Examples of CDEs included: Do you snore; How often do you feel tired or fatigued; etc.)

CDE Details 1.00 2011-02-28 00:00:00.0 Parkinson's Disease Parkinson's Disease
Brief Index of Sexual Functioning for Women (BISF-W) N/A 1.00 2013-11-14 00:00:00.0 Parkinson's Disease Parkinson's Disease
Brief Pain Inventory (Short Form)

One of the most widely used measurement tools for assessing clinical pain; shown to be an appropriate measure for pain caused by a wide range of clinical conditions

CDE Details 1.00 2012-05-14 00:00:00.0 Parkinson's Disease Parkinson's Disease
Brief Psychiatric Rating Scale (BPRS)

The Brief Psychiatric Rating Scale (BPRS) has been widely used in PD psychiatric clinical trials and is the easiest/shortest to administer. It was initially developed for schizophrenia. The instrument should be used in cognitively intact subjects and does not require an informant.

CDE Details 1.00 2012-05-14 00:00:00.0 Parkinson's Disease Parkinson's Disease
Brief Smell Identification Test (Brief-SIT) N/A 1.00 2013-11-14 00:00:00.0 Parkinson's Disease Parkinson's Disease
Cambridge Cognitive Assessment-Revised (CAMCOG-R) N/A 1.00 2013-11-14 00:00:00.0 Parkinson's Disease Parkinson's Disease
Cambridge Neuropsychological Test Automated Battery (CANTAB)

CANTAB contains a total of 25 cognitive tasks, each loading onto specific cognitive domains across memory, attention, executive function, social cognition, psychomotor and processing speed. Individual tests can be grouped together to create a battery relevant for particular research. Computer administered cognitive test battery which uses non-verbal visual stimuli and is culturally neutral. The constructs measured by this test are attention, executive functioning and memory.

N/A 1.00 2017-03-08 10:16:33.0 Parkinson's Disease Parkinson's Disease
Cambridge-Hopkins Restless Legs Syndrome Diagnostic Questionnaire (CH-RLSQ)

The Cambridge-Hopkins diagnostic questionnaire for restless leg syndrome (CH-RLSq) was developed with several iterations to include items covering the basic diagnostic features of RLS and to provide some basic differential diagnosis.

CDE Details 1.00 2012-03-23 00:00:00.0 Parkinson's Disease Parkinson's Disease
CDR System

The Cognitive Drug Research computerized cognitive assessment system (CDR System) is an integrated set of cognitive tasks, developed in the 1980s to provide a practical, sensitive, reliable and repeatable method of assessing core aspects of cognitive function in healthy volunteers and any patient population.

N/A 1.00 2017-03-08 10:28:28.0 Parkinson's Disease Parkinson's Disease
Cognitive Guidelines for CDE Use

Contains a summary of the subgroup process in determining the instruments and elements they recommended for Cognitive studies in Parkinson's disease.

N/A 1.10 2012-08-10 00:00:00.0 Parkinson's Disease Parkinson's Disease
Composite Autonomic Severity Scale (CASS) N/A 1.00 2013-11-14 00:00:00.0 Parkinson's Disease Parkinson's Disease
Composite Autonomic Symptom Scale

Composite Autonomic Symptom Scale (COMPASS-8) (COMPASS-31)

N/A 1.00 2013-11-14 00:00:00.0 Parkinson's Disease Parkinson's Disease
Compulsive Eating Scale (CES)

The Compulsive Eating Scale (CES) is a 32-item self-report questionnaire that measures the degree of compulsive eating. Items in the CES include "emotional states related to food and eating as well as information with regard to weight, weight control, height, and eating binge.

N/A 1.00 2016-06-09 14:42:18.0 Parkinson's Disease Parkinson's Disease
Constipation Severity Scale (CSS)

The Constipation Severity Scale is an ordinal symptom frequency scale that is calculated as a sum of a 5-point ordinal frequency ratings for the six Rome III (IV) functional constipation questions. The Rome III (IV) CSS is a consistent measure that augments the diagnostic utility of the Rome III (IV) constipation criteria and reflects the degree of quality of life impairment.

N/A 1.00 2016-06-09 14:46:33.0 Parkinson's Disease Parkinson's Disease
Demographics

Contains data elements that are collected to describe the demographics of the study population relevant to Parkinson's disease research. (Examples of CDEs included: General CDE demographic elements (gender, race, ethnicity, etc.); handedness; Date of Birth)

CDE Details 1.10 2012-08-10 00:00:00.0 Parkinson's Disease Parkinson's Disease
Diagnostic and Statistical Manual of Mental Disorders (DSM-5) N/A 1.00 2013-11-14 00:00:00.0 Parkinson's Disease Parkinson's Disease
Drooling Rating Scale (DRS)

The DRS evaluates drooling in multiple situations including while sitting, standing, while in bed, talking, and eating and drinking.

N/A 1.00 2016-06-09 14:49:55.0 Parkinson's Disease Parkinson's Disease
Drooling Severity and Frequency Scale (DSFS)

The Drooling Severity and Frequency Scale (DSFS) is a semi-quantitative assessment of the amount of drooling.

CDE Details 1.00 2012-05-11 00:00:00.0 Parkinson's Disease Parkinson's Disease
Epi/Envt Guidelines for CDE Use

Contains a summary of the subgroup process in determining the instruments and elements they recommended for Epidemiology/Environmental studies in Parkinson's disease.

N/A 1.00 2011-02-28 00:00:00.0 Parkinson's Disease Parkinson's Disease
EuroQoL-5 Dimension Questionnaire (EQ-5D)

Standardized measure of health status developed by the EuroQol Group in order to provide a simple, generic measure of health for clinical and economic appraisal

CDE Details 1.00 2012-04-10 00:00:00.0 Parkinson's Disease Parkinson's Disease
Family History

Contains data elements that determine if Parkinson's disease or other related neurological diseases/disorders run in the participant's/ subject's immediate family. (Examples of CDEs included: Number of Family Members; Number with PD or Parkinsonism; Number with Other Neurological Disorder; etc.)

CDE Details 1.10 2012-08-10 00:00:00.0 Parkinson's Disease Parkinson's Disease
Fatigue Severity Scale (FSS)

The Fatigue Severity Scale (FSS) is a nine-item questionnaire that assesses the effect of fatigue on daily living.

CDE Details 1.00 2012-05-11 00:00:00.0 Parkinson's Disease Parkinson's Disease
Food Frequency Questionnaire (FFQ)

The Food Frequency Questionnaire (FFQ) consists of a list of foods with little descriptive detail, and the respondent answers questions about the frequency of each food on the list.

CDE Details 1.00 2012-05-11 00:00:00.0 Parkinson's Disease Parkinson's Disease
Functional Neurosurgery

Contains data elements about pre-, intra-, and post-operative guidelines for DBS reports. (Examples of CDEs included: Head Position; Intraoperative Target Verification; L-dopa challenge responses; etc.)

CDE Details 1.10 2012-08-10 00:00:00.0 Parkinson's Disease Parkinson's Disease
Gambling Symptom Assessment Scale (G-SAS)

Contains data elements used to evaluate gambling symptoms. (Examples of CDEs included: Urges to Gamble; Thoughts on Gambling; Emotional distress over gambling; etc.)

CDE Details 1.00 2012-06-25 00:00:00.0 Parkinson's Disease Parkinson's Disease
General Core

This form contains all of the general core CDEs and has been duplicated across all of the diseases on the NINDS CDE website.

CDE Details 1.00 2014-08-11 13:44:58.0 Parkinson's Disease Parkinson's Disease
Geriatric Depression Scale (GDS)

Developed to screen for depression without notable focus on somatic symptoms. Items were geared to assess psychological symptoms and cognitive complaints associated with depression. The measure's simplicity was also designed to limit resistance towards psychiatric assessment or intervention by older adults.

CDE Details 1.00 2012-06-25 00:00:00.0 Parkinson's Disease Parkinson's Disease
Hamilton Anxiety Rating Scale (HAM-A)

Contains data elements which rate the severity of the participant/subject's level of anxiety. (Examples of CDEs included: Anxious mood; Tension; Fears; etc.)

CDE Details 1.00 2012-06-25 00:00:00.0 Parkinson's Disease Parkinson's Disease
Hamilton Depression Rating Scale (HDRS)

Contains data elements which cumulatively rate the participant/subject's level of depression. (Examples of CDEs included: Insomnia; Feelings of Guilt; Agitation; etc.)

N/A 1.00 2012-06-25 00:00:00.0 Parkinson's Disease Parkinson's Disease
Haraldsson's Questionnaire N/A 1.00 2013-11-14 00:00:00.0 Parkinson's Disease Parkinson's Disease
History of Early Exposure

Contains data elements about the history of being breast fed, sibship/birth order, and preschool attendance. (Examples of CDEs included: Did you attend preschool; Numbers of brothers and sisters; Did your mother breastfeed you; etc.)

CDE Details 1.10 2012-08-10 00:00:00.0 Parkinson's Disease Parkinson's Disease
Hospital Anxiety and Depression Scale (HADS)

The HADS is a 14-item self-report scale that consists of a depression and an anxiety scale, each with 7 items. The scale was designed to screen for mood disorders in general (non-psychiatric) medical outpatients. It focuses on subjective disturbances of mood rather than physical signs, and aims at distinguishing depression from anxiety. Compared to other instruments scales, it focuses on emotional aspects of anxiety disturbances, as opposed to somatic and cognitive symptoms.

N/A 1.00 2012-05-11 00:00:00.0 Parkinson's Disease Parkinson's Disease
Imaging Guidelines for CDE Use

Contains a summary of the subgroup process in determining the elements they recommended for Imaging studies in Parkinson's disease.

N/A 1.00 2011-02-28 00:00:00.0 Parkinson's Disease Parkinson's Disease
Infection History

Contains data elements about the participant/subject's history of influenza, pneumonia, and meningitis. (Examples of CDEs included: Age at time of pneumonia; First influenza vaccination; Age at time of meningitis; etc.)

CDE Details 1.10 2012-08-10 00:00:00.0 Parkinson's Disease Parkinson's Disease
Insomnia Severity Index (ISI)

Contains data elements that assess the participant/subject's insomnia severity. (Examples of CDEs included: Falling asleep; Staying asleep; Sleep pattern; etc.)

CDE Details 1.00 2012-06-25 00:00:00.0 Parkinson's Disease Parkinson's Disease
Instrument for the Assessment of Restless Legs Syndrome Severity (IRLSSG-Rating Scale) N/A 1.00 2013-11-14 00:00:00.0 Parkinson's Disease Parkinson's Disease
International Consultation on Incontinence Modular Questionnaire-Overactive Bladder (ICIQ-OAB) N/A 1.00 2013-11-14 00:00:00.0 Parkinson's Disease Parkinson's Disease
International Index of Erectile Function-5 (IIEF-5) N/A 1.00 2013-11-14 00:00:00.0 Parkinson's Disease Parkinson's Disease
International Prostate Symptom Scale (IPSS) N/A 1.00 2013-11-14 00:00:00.0 Parkinson's Disease Parkinson's Disease
Karolinska Sleepiness Scale (KSS) N/A 1.00 2013-11-14 00:00:00.0 Parkinson's Disease Parkinson's Disease
Lille Apathy Rating Scale (LARS)

The Lille Apathy Rating Scale (LARS) is a structured, standardized interview
questionnaire designed to distinguish between the various features of apathy.

N/A 1.00 2017-03-08 10:55:40.0 Parkinson's Disease Parkinson's Disease
Mattis Dementia Rating Scale (MDRS) N/A 1.00 2013-11-14 00:00:00.0 Parkinson's Disease Parkinson's Disease
McElroy Diagnostic Criteria for Compulsive Buying N/A 1.00 2013-11-14 00:00:00.0 Parkinson's Disease Parkinson's Disease
Medical History of Parkinson's Disease

Contains data elements related to the study participant's/ subject's health history when Parkinson's disease was first diagnosed. Particular attention is paid to motor symptoms. (Examples of CDEs included: Diagnostic features/criteria; Initial Motor Symptoms; etc.)

CDE Details 1.10 2012-08-10 00:00:00.0 Parkinson's Disease Parkinson's Disease
Mini Nutritional Assessment (MNA)

The MNA? is a validated nutrition screening and assessment tool that can identify geriatric patients age 65 and above who are malnourished or at risk of malnutrition.

CDE Details 1.00 2012-05-11 00:00:00.0 Parkinson's Disease Parkinson's Disease
Mini-Mental State Examination (MMSE) N/A 1.00 2013-11-14 00:00:00.0 Parkinson's Disease Parkinson's Disease
Montgomery-Asberg Depression Scale (MADRS) N/A 1.00 2013-11-14 00:00:00.0 Parkinson's Disease Parkinson's Disease
Montreal Cognitive Assessment (MoCA)

Montreal Cognitive Assessment (MoCA)

N/A 1.00 2013-05-16 00:00:00.0 Parkinson's Disease Parkinson's Disease
Movement Disorder Society - Unified Parkinson's Disease Rating Scale (MDS-UPDRS)

Contains data elements about non-motor and motor features of Parkinson's disease. This is the new version of the UPDRS sponsored by the MDS. (Examples of CDEs included: Non-motor examination; Motor examination; etc.)

CDE Details 1.00 2011-02-28 00:00:00.0 Parkinson's Disease Parkinson's Disease
MR

Contains data elements used to assess function and anatomy in the brain. (Examples of CDEs included: Pulse Sequence; Field Strength; Head Coil; etc.)

CDE Details 1.10 2012-08-10 00:00:00.0 Parkinson's Disease Parkinson's Disease
MRI and Spectroscopy

Contains data elements used in imaging studies to visualize internal structures. (Examples of CDEs included: Pre-scan actions; Site of Visual Analysis; etc.)

CDE Details 1.10 2012-08-10 00:00:00.0 Parkinson's Disease Parkinson's Disease
Multiple Sleep Latency Test (MSLT) and Guidelines

Contains recommendations used in the assessment and diagnosis of excessive somnolence and evaluation of excessive daytime sleepiness.

N/A 1.00 2011-02-28 00:00:00.0 Parkinson's Disease Parkinson's Disease
National Institutes of Health (NIH) Toolbox

National Institutes of Health (NIH) Toolbox

N/A 1.00 2013-05-16 00:00:00.0 Parkinson's Disease Parkinson's Disease
Neuropathology

Contains data elements about post mortem brain tissue and disease progression. (Examples of CDEs included: Macroscopic aspects; Alzheimer's type pathology; Lewy body pathology; etc.)

CDE Details 1.10 2012-08-10 00:00:00.0 Parkinson's Disease Parkinson's Disease
Neuropsychiatric Inventory Questionnaire (NPI-Q)

Neuropsychiatric Inventory Questionnaire (NPI-Q)

N/A 1.00 2013-05-16 00:00:00.0 Parkinson's Disease Parkinson's Disease
NINDS Repository Parkinsonism Data Elements N/A 1.00 2012-08-10 00:00:00.0 Parkinson's Disease Parkinson's Disease
Non-Motor Symptom assessment scale for Parkinson's Disease (NMSS)

The Non-Motor Symptoms Scale (NMSS) is an instrument specifically designed for the comprehensive assessment of nonmotor symptoms (NMS) in patients with Parkinson's disease.

CDE Details 1.00 2012-05-11 00:00:00.0 Parkinson's Disease Parkinson's Disease
Non-Motor Symptom Questionnaire (NMS-Quest) (PD-NMS) CDE Details 1.00 2012-08-23 00:00:00.0 Parkinson's Disease Parkinson's Disease
Non-Parkinson's Disease Medication Log

Contains data elements about the participant/subject's non-PD medication history during study enrollment. (Examples of CDEs included: Macroscopic aspects; Alzheimer's type pathology; Lewy body pathology; etc.)

CDE Details 1.10 2012-08-10 00:00:00.0 Parkinson's Disease Parkinson's Disease
Non-prescribed Drug Use Questionnaire

Contains data elements about use of drugs not prescribed by a doctor in the participant/subject's lifetime. (Examples of CDEs included: Year of First Use; Last Year Used; Total Years Used; Frequency of Use; etc.)

CDE Details 1.10 2012-08-10 00:00:00.0 Parkinson's Disease Parkinson's Disease
Nottingham Health Profile (NHP) N/A 1.00 2013-09-17 00:00:00.0 Parkinson's Disease Parkinson's Disease
Numeric Rating Scale (NRS)-Box 21 Scale N/A 1.00 2013-11-14 00:00:00.0 Parkinson's Disease Parkinson's Disease
Nurses' Health Study Questionnaire (NHQ) N/A 1.00 2013-11-14 00:00:00.0 Parkinson's Disease Parkinson's Disease
Ohio State University TBI Identification Method Short Form

Ohio State University TBI Identification Method-Short Form (OSU TBI-ID-SF) is a shortened version of a structured interview developed using recommendations from the CDC for the detection of history of exposure to traumatic brain injury. It elicits self- or proxy-reports of TBI occurring over a person's lifetime according to selected summary indices.

CDE Details 1.00 2012-05-11 00:00:00.0 Parkinson's Disease Parkinson's Disease
Other Non-motor Guidelines for CDE Use

Contains a summary of the subgroup process in determining the instruments and elements they recommended for Other Non-motor studies in Parkinson's disease.

CDE Details 1.10 2012-08-10 00:00:00.0 Parkinson's Disease Parkinson's Disease
Parkinson Anxiety Scale (PAS)

The Parkinson Anxiety Scale (PAS) is a 12-item observer or patient-rated scale with three subscales, for persistent anxiety, episodic anxiety, and avoidance behavior, that provides a reliable measurement of the severity of anxiety symptoms in Parkinson's patients.

N/A 1.00 2017-03-08 11:15:01.0 Parkinson's Disease Parkinson's Disease
Parkinson's Disease Medication Log

Contains data elements about non-study PD medications the participant/subject has taken during study enrollment. (Examples of CDEs included: Medication Class; Medication Name; Estimated Total Duration Exposure; etc.)

CDE Details 1.10 2012-08-10 00:00:00.0 Parkinson's Disease Parkinson's Disease
Parkinson's Disease Quality of Life Questionnaire (PDQL) N/A 1.00 2013-11-14 00:00:00.0 Parkinson's Disease Parkinson's Disease
Parkinson's Disease Quality of Life Scale (PDQUALIF)

Contains data elements related to non-motor symptoms of PD. (Examples of CDEs included: balance, exercise, social activities, and sleep).

CDE Details 1.00 2012-10-15 00:00:00.0 Parkinson's Disease Parkinson's Disease
Parkinson's Disease Questionnaire (PDQ-39) N/A 1.00 2013-11-14 00:00:00.0 Parkinson's Disease Parkinson's Disease
Parkinson's Disease Sleep Scale 2nd Version (PDSS-2) CDE Details 1.00 2012-08-23 00:00:00.0 Parkinson's Disease Parkinson's Disease
Parkinson's Impact Scale (PIMS)

The 10 item scale measures the impact of Parkinson's disease. This disease specific measure can be completed by the subject or by an interviewer. It is intended for a patient but has been validated in caregivers as well. It has four domains: physical aspects of disease (5 items), psychological aspects (2 items), social aspects (2 items) and sexuality (2 items).

CDE Details 1.00 2012-05-11 00:00:00.0 Parkinson's Disease Parkinson's Disease
Parkinson's Neuropsychometric Dementia Assessment (PANDA) N/A 1.00 2013-11-14 00:00:00.0 Parkinson's Disease Parkinson's Disease
Parkinson?s Disease-Cognitive Rating Scale (PD-CRS)

The Parkinson?s Disease-Cognitive Rating Scale (PD-CRS) was developed to ?capture the whole spectrum of cognitive functions impaired over the course of PD.?

N/A 1.00 2017-06-29 11:27:55.0 Parkinson's Disease Parkinson's Disease
Pathological Gambling Adaptation of the Yale-Brown Obsessive Compulsive Scale (PG-YBOCS)

The Pathological Gambling version of the Yale-Brown Obsessive Compulsive Scale (PG-YBOCS) is a 10-item clinician-administered scale that measures the severity of pathological gambling within a set period of time (i.e., the past one / two week(s)).

N/A 1.00 2016-06-15 11:49:45.0 Parkinson's Disease Parkinson's Disease
Patient-Reported Outcomes Measurement Information System (PROMIS)

Patient-Reported Outcomes Measurement Information System (PROMIS)

N/A 1.00 2013-10-29 00:00:00.0 Parkinson's Disease Parkinson's Disease
PD CDE Instrument Recommendations by Outcome Domain and Classification

Contains all PD Subgroups' instrument/scale recommendations which are categorized into seven domains. Each recommended outcome/ end point is further classified as Core, Supplemental, or Exploratory. [Examples of instruments recommended: MDS-UPDRS/UPDRS; Hamilton Anxiety Rating Scale (HAM-A), etc.]

N/A 1.00 2012-08-10 00:00:00.0 Parkinson's Disease Parkinson's Disease
PD DOC Mini Environmental Risk Questionnaire for Parkinson's Disease Patients Baseline (PD DOC MERQ-PD-B)

The mini-environmental risk factor questionnaire (MERQ) is from the Parkinson's Disease Data and Organizing Center (PD-DOC). It contains questions regarding use of medications linked to PD occurrence or progression such as NSAIDs, statins, and hormone replacement therapy.

CDE Details 1.00 2012-05-11 00:00:00.0 Parkinson's Disease Parkinson's Disease
Pelli Robson Test

Measures contrast sensitivity using a single large letter size (20/60 optotype), with contrast varying across groups of letters

N/A 1.00 2012-04-10 00:00:00.0 Parkinson's Disease Parkinson's Disease
PET-SPECT

Contains data elements used to measure cellular/tissue change in a participant/subject. (Examples of CDEs included: Radioligand; Quantitative Imaging Outcome; etc.)

CDE Details 1.10 2012-08-10 00:00:00.0 Parkinson's Disease Parkinson's Disease
Pittsburgh Sleep Quality Index (PSQI)

The Pittsburgh Sleep Quality Index is a self-rated questionnaire that primarily assesses nighttime sleep problems. It focuses on sleep experiences over the past month. It has 19 self-rated questions and 5 additional questions for a bed partner or roommate.

CDE Details 1.00 2012-05-11 00:00:00.0 Parkinson's Disease Parkinson's Disease
Proposed Criteria for Diagnosis of the Syndrome of Apathy

The Proposed Criteria for Diagnosis of the Syndrome of Apathy focus on the lack of goal directed behavior, have a four week time criteria and require impairment of functioning.

N/A 1.00 2012-04-27 00:00:00.0 Parkinson's Disease Parkinson's Disease
Psychiatric and Psychological Function Guidelines for CDE Use

Contains a summary of the subgroup process in determining the instruments and elements they recommended for Psychiatry studies in Parkinson's disease.

N/A 1.10 2012-08-10 00:00:00.0 Parkinson's Disease Parkinson's Disease
Quality of Life Guidelines for CDE Use

Contains a summary of the subgroup process in determining the instruments and elements they recommended for Quality of Life studies in Parkinson's disease.

N/A 1.10 2012-08-10 00:00:00.0 Parkinson's Disease Parkinson's Disease
Quality of Life in Neurological Disorders (Neuro-QOL)

Quality of Life in Neurological Disorders (Neuro-QOL)

N/A 1.00 2013-05-16 00:00:00.0 Parkinson's Disease Parkinson's Disease
Quality of Life in Neurological Disorders (Neuro-QOL)

Quality of Life in Neurological Disorders (Neuro-QOL)

N/A 1.00 2013-05-16 00:00:00.0 Parkinson's Disease Parkinson's Disease
Quality of Life in Swallowing Disorders (SWAL-QOL)

Contains data elements for the Quality of Life in Swallowing Disorders (SWAL-QOL) [Examples of CDEs included: Dealing with my swallowing problem is very difficult; My swallowing problem is a major distraction in my life]

CDE Details 1.00 2012-08-31 00:00:00.0 Parkinson's Disease Parkinson's Disease
Quantitative Sudomotor Axon Reflex Test (QSART) N/A 1.00 2013-11-14 00:00:00.0 Parkinson's Disease Parkinson's Disease
Questionnaire about Buying Behavior (QABB)

The Buying Questionnaire is a 19-item self-rated questionnaire that measures severity of buying behaviors.

CDE Details 1.00 2012-03-23 00:00:00.0 Parkinson's Disease Parkinson's Disease
Questionnaire for Impulsive-Compulsive Behaviors in Parkinson's Disease (QUIP) (Short form) CDE Details 1.00 2012-08-23 00:00:00.0 Parkinson's Disease Parkinson's Disease
Questionnaire for Impulsive-Compulsive Behaviors in Parkinson's Disease (QUIP) (Long form) CDE Details 1.00 2012-08-23 00:00:00.0 Parkinson's Disease Parkinson's Disease
Questionnaire Impulsive-Compulsive Disorders Parkinson's Disease-Rating Scale (QUIP-RS)

The Questionnaire for Impulsive-Compulsive Disorders in Parkinson's Disease-Rating Scale (QUIP-RS) quantifies the severity of a variety of compulsive disorders and behaviors reported to occur in Parkinson?s disease (PD); supports a diagnosis of impulse control disorders or behaviors (ICDs); and monitors changes in patient?s ICD symptom severity with time, including response to treatment.

N/A 1.00 2017-03-08 11:31:12.0 Parkinson's Disease Parkinson's Disease
Questions on Life Satisfaction - Movement Disorder (QLS-MD) and Deep Brain Stimulation (QLS-DBS) Modules N/A 1.00 2013-11-14 00:00:00.0 Parkinson's Disease Parkinson's Disease
Risk Factor Questionnaire (RFQ) - All

This is a comprehensive document of all the Risk Factor Questionnaires (e.g., RFQ - Occupation and Employment Status; RFQ - Physical Activity and Sleep; RFQ - Height and Weight; etc.)

N/A 1.00 2012-08-10 00:00:00.0 Parkinson's Disease Parkinson's Disease
Risk Factor Questionnaire (RFQ) - NSAIDS and Calcium Channel Blockers (CCB)

Contains data elements about use of NSAIDS and Calcium Channel Blockers. (Examples of CDEs included: Ages/years regularly taken ibuprofen-based, non-aspirin medications; Treated for conditions requiring prescription for calcium channel blockers; etc.)

CDE Details 1.00 2012-05-11 00:00:00.0 Parkinson's Disease Parkinson's Disease
Risk Factor Questionnaire (RFQ) - Occupation and Employment Status

Contains data elements about occupation and employment status of the participant/subject during different phases of life. (Examples of CDEs included: Military history; Occupation history from birth-25 years, 26-35 years, 36-45 years, 46-55 years, 56-65 years, and 66 years and above; etc.)

CDE Details 1.00 2012-05-11 00:00:00.0 Parkinson's Disease Parkinson's Disease
Risk Factor Questionnaire (RFQ) - Physical Activity and Sleep

Contains data elements about types of physical activity and amount of sleep the participant/subject received during different phases of life. (Examples of CDEs included: Physical activity and sleep hours from 12-17 years, 18-25 years, 26-35 years, 36-45 years, 46-55 years, 56-65 years, and 66 years and above; etc.)

CDE Details 1.00 2011-02-28 00:00:00.0 Parkinson's Disease Parkinson's Disease
Risk Factor Questionnaire (RFQ) - Residential History

Contains data elements about the participant/subject's current and past residences during different periods of life. (Examples of CDEs included: Residence from birth-17 years, 18-25 years, 26-35 years, 36-45 years, 46-55 years, 56-65 years, and 66 years and above; Pesticide spraying at residence; etc.)

CDE Details 1.00 2012-05-11 00:00:00.0 Parkinson's Disease Parkinson's Disease
Risk Factor Questionnaire (RFQ) - Toxicants

Contains data elements about the participant/subject's exposure to different categories of toxicants at work and at home. (Examples of CDEs included: Use of glues or adhesives, solvents or degreasers, flame cut, weld, or braze metals, soldered, and, metal dust or metal fumes; etc.)

CDE Details 1.00 2012-05-11 00:00:00.0 Parkinson's Disease Parkinson's Disease
Risk Factor Questionnaire (RFQ-U) - Height and Weight

Contains data elements about the participant's/subject's height, weight, and body type at 3 different age periods. (Examples of CDEs included: Height and weight at 25 years, 40 years, and 60 years; etc.)

CDE Details 1.10 2012-10-15 00:00:00.0 Parkinson's Disease Parkinson's Disease
Risk Factor Questionnaire (RFQ-U) - Pesticides (Home)

Contains data elements about the participant/subject's lifetime pesticide exposure at work and home. (Examples of CDEs included: Exposure to pesticides in different work environments from birth-25 years, 26-35 years, 36-45 years, 46-55 years, 56-65 years, and 66 years and above; etc.)

CDE Details 1.00 2012-05-11 00:00:00.0 Parkinson's Disease Parkinson's Disease
Risk Factor Questionnaire (RFQ-U) - Pesticides (Work)

Contains data elements about the participant/subject's lifetime pesticide exposure at work and home. (Examples of CDEs included: Exposure to pesticides in different work environments from birth-25 years, 26-35 years, 36-45 years, 46-55 years, 56-65 years, and 66 years and above; etc.)

CDE Details 1.00 2012-05-11 00:00:00.0 Parkinson's Disease Parkinson's Disease
Risk Factor Questionnaire (RFQ-U) - Smoking and Tobacco

Contains data elements about the participant/subject's smoking use and habits. (Examples of CDEs included: Ages/years regularly smoked; Cigarettes smoked per day; Use of other tobacco products; etc.)

CDE Details 1.00 2012-05-11 00:00:00.0 Parkinson's Disease Parkinson's Disease
Rome III Constipation Module

This questionnaire was developed to assist physicians, health care professionals and researchers in identifying individuals who have one or more functional gastrointestinal disorders (FGIDs).

CDE Details 1.00 2012-06-25 00:00:00.0 Parkinson's Disease Parkinson's Disease
Scale for Outcomes in Parkinson's Disease Autonomic (SCOPA-AUT)

Contains data elements that assess the extent in the past month the participant/subject has had problems with bodily functions. (Examples of CDEs included: Difficulty swallowing; Difficulty passing urine; Excessive sweating; etc.)

CDE Details 1.00 2012-05-11 00:00:00.0 Parkinson's Disease Parkinson's Disease
Scale for Outcomes in Parkinson's Disease-Sleep (SCOPA-Sleep)

The SCOPA-S (Scale for Outcomes of Parkinson's disease-Sleep) is a self-rated questionnaire developed originally for research in Parkinson's disease that addresses both nighttime sleep problems and daytime sleepiness. Its questions focus on experiences over the past month. It has two questions on the use of sleeping medications, one question on an overall global perception of sleep at night, 6 questions on sleep patterns at night and 6 questions on sleep in the day.

CDE Details 1.00 2012-05-11 00:00:00.0 Parkinson's Disease Parkinson's Disease
Scale for the Assessment of Positive Symptoms (SAPS)

Contains data elements which are used to assess positive symptoms such as hallucinations, delusions, bizarre behavior, and positive formal thought disorder that occur primarily in schizophrenia. (Examples of CDEs included: Hallucinations; Delusions; Bizarre Behavior; etc.) .

CDE Details 1.00 2012-06-25 00:00:00.0 Parkinson's Disease Parkinson's Disease
Scale for the Assessment of Positive Symptoms-Parkinson?s Disease (SAPS-PD)

The SAPS-PD is a shortened version of the original SAPS scale which includes a subset of questions from the hallucinations and delusions subdomains (SAPS-H+D) indicative of those symptoms most commonly seen in a PDP patient population

N/A 1.00 2017-03-08 11:56:08.0 Parkinson's Disease Parkinson's Disease
Scales for Outcomes in Parkinson's Disease-Cognitive (SCOPA-COG)

Contains data elements to assess specific aspects of cognitive function in Parkinson's disease. (Examples of CDEs included: Memory and Function; Attention; Executive Functions; etc.)

CDE Details 1.00 2012-05-11 00:00:00.0 Parkinson's Disease Parkinson's Disease
Scales for Outcomes in Parkinson's Disease-Psychosocial (SCOPA-PS)

The Scales for Outcomes in PD-Psychological (SCOPA-PS) measures psychosocial functioning in PD.

CDE Details 1.00 2012-05-11 00:00:00.0 Parkinson's Disease Parkinson's Disease
Schedule for the Evaluation of Individual Quality of Life (SEQOL) N/A 1.00 2013-11-14 00:00:00.0 Parkinson's Disease Parkinson's Disease
Schedule for the Evaluation of Individual Quality of Life - Direct Weighting (SEIQoL-DW) N/A 1.00 2013-09-16 00:00:00.0 Parkinson's Disease Parkinson's Disease
Sexual Compulsivity Scale (SCS)

The Sexual Compulsivity Scale is a 10-item self-rated questionnaire that assesses tendencies toward sexual preoccupation.

CDE Details 1.00 2012-06-25 00:00:00.0 Parkinson's Disease Parkinson's Disease
Short Form 36-Item Health Survey (SF-36)

Contains data elements for the SF-36 instrument [Examples of CDEs included: In general would you say your health is and compared to one year ago, how would you rate your health in general now]"

CDE Details 1.00 2011-05-01 00:00:00.0 Parkinson's Disease Parkinson's Disease
Short Portable Mental Status Questionnaire (SPMSQ)

Contains data elements about the participant/subject's global cognitive function. (Examples of CDEs included: Current address; Current President; Age; Mother's maiden name; etc.)

CDE Details 1.00 2012-06-25 00:00:00.0 Parkinson's Disease Parkinson's Disease
Sialorrhea Clinical Scale for Parkinson's Disease (SCS-PD)

The Sialorrhea Clinical Scale for PD (SCS-PD) assesses drooling severity and frequency as well as social and functional impairment from drooling.

CDE Details 1.00 2012-05-14 00:00:00.0 Parkinson's Disease Parkinson's Disease
Sickness Impact Profile (SIP) N/A 1.00 2013-11-14 00:00:00.0 Parkinson's Disease Parkinson's Disease
Sleep Apnea Scale of Sleep Disorders Questionnaire (SA-SDQ)

The Sleep Apnea scale of the Sleep Disorders Questionnaire (SA-SDQ) is 12-item validated measure useful as a screening instrument for sleep-related breathing disorders.

CDE Details 1.00 2012-06-25 00:00:00.0 Parkinson's Disease Parkinson's Disease
South Oaks Gambling Screen (SOGS)

The South Oaks Gambling Screen (SOGS) is a self-rated screening questionnaire and is the most commonly used instrument to screen for pathological or problem gambling in the general population.

CDE Details 1.00 2012-05-11 00:00:00.0 Parkinson's Disease Parkinson's Disease
Stanford Sleepiness Scale (SSS)

Contains data elements that assess how alert the participant/subject is feeling. (Examples of CDEs included: Feeling active, alert; Functioning at high levels; etc.)

CDE Details 1.00 2012-06-25 00:00:00.0 Parkinson's Disease Parkinson's Disease
STOP Questionnaire

The STOP questionnaire is a concise and easy to- use screening tool for obstructive sleep apnea (OSA). It has been developed and validated in surgical patients at preoperative clinics. Combined with body mass index, age, neck size, and gender, it had a high sensitivity, especially for patients with moderate to severe OSA.

CDE Details 1.00 2012-06-25 00:00:00.0 Parkinson's Disease Parkinson's Disease
Structured Clinical Interview for DSM-IV Axis Disorders-Patient Version (SCID-I/P) N/A 1.00 2013-11-14 00:00:00.0 Parkinson's Disease Parkinson's Disease
Structured Clinical Interview for Pathological Gambling (SCI-PG) CDE Details 1.00 2012-08-23 00:00:00.0 Parkinson's Disease Parkinson's Disease
Summary of Diagnostic Criteria and Assessments for Psychosis in Parkinson?s Disease N/A 1.00 2016-06-09 14:53:45.0 Parkinson's Disease Parkinson's Disease
Survey Screen for Sleep Apnea (SSSA)

The symptoms included in the questionnaire are associated with sleep disorders such as sleep apnea-related symptoms, difficulty sleeping symptoms, EDS symptoms, and narcolepsy-like symptoms.

CDE Details 1.00 2012-06-25 00:00:00.0 Parkinson's Disease Parkinson's Disease
Swallowing Disturbance Questionnaire (SDQ) CDE Details 1.00 2012-08-23 00:00:00.0 Parkinson's Disease Parkinson's Disease
The American Academy of Sleep Medicine (AASM): International Classification of Sleep Disorders (ICSD) Criteria N/A 1.00 2013-11-14 00:00:00.0 Parkinson's Disease Parkinson's Disease
The International Association for the Study of Pain (IASP) Definitions for Pain N/A 1.00 2013-11-14 00:00:00.0 Parkinson's Disease Parkinson's Disease
The International Restless Legs Syndrome Study Group Diagnostic Criteria N/A 1.00 2013-11-14 00:00:00.0 Parkinson's Disease Parkinson's Disease
The REM Sleep Behavior Disorder (RBD) Screening Questionnaire (RBDSQ) N/A 1.00 2013-11-14 00:00:00.0 Parkinson's Disease Parkinson's Disease
UK Parkinson's Disease Society Brain Bank Criteria for the Diagnosis of Parkinson's Disease N/A 1.00 2013-11-14 00:00:00.0 Parkinson's Disease Parkinson's Disease
Unified Parkinson's Disease Rating Scale (UPDRS)

Contains data elements about non-motor and motor features of Parkinson's disease. (Examples of CDEs included: Non-motor examination; Motor examination; etc.)

CDE Details 1.00 2012-05-11 00:00:00.0 Parkinson's Disease Parkinson's Disease
University of Pennsylvania Smell Identification Test (UPSIT) N/A 1.00 2013-11-14 00:00:00.0 Parkinson's Disease Parkinson's Disease
World Health Organization Quality of Life Assessment (WHOQOL-BREF)

The WHOQOL-BREF was developed as short version of the WHOQOL-100 for use in situations where time is restricted, where respondent burden must be minimized and where detail is less necessary e.g. large epidemiologic surveys and some clinical trials.

CDE Details 1.00 2012-05-11 00:00:00.0 Parkinson's Disease Parkinson's Disease
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