Parkinson's Disease

Now Available: Parkinson's Disease Version 2.0 CDEs

Data Standards

Organized by domains and subdomains often used in clinical studies, data standards include:

•         CDEs — Classified as Core, Supplemental–Highly Recommended, Supplemental, or Exploratory

•         CRF Modules — Template forms that logically organize CDEs for data collection

•         Guidance Documents — Provide further information about the CDEs

•         Instrument Notice of Copyright (NOC) Documents Include pertinent information on recommended instruments (Instrument Notice of Copyright Information)

Parkinson's Disease Start-up Resource Listing: All Core and Supplemental–Highly Recommended CDEs recommended for Parkinson's Disease study start-up

Parkinson's Disease Highlight Summary: Overview of all Parkinson's Disease-specific CDE recommendations as they appear on the website

Click Expand All to view the CDEs associated with the CRF modules, organized by domain and subdomain.

Form Search Instructions - Please Read Before Searching

The Form Search is designed to filter the CRF Modules, Guidance Documents, and NOCs on this page by Search Term, Domain, Subdomain, and/or Copyright Status. The Copyright field is designed to filter between forms that are freely available online and forms that are copyrighted or trademarked. Please note that regardless of copyright/trademark status, these instruments are not available on this website. All recommended instruments, regardless of copyright status, have informational documents posted on the NINDS CDE website which provide details concerning availability.

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The default setting for Sub-Disease, Domain, Sub-domain and Copyright fields is ‘Any’.

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Select a Sub-Disease for your NeuroRehab study to view the CDEs for those types of studies.

NeuroRehab Comprehensive includes all CDE recommendations.

NeuroRehab General includes all CDE recommendations that are not disease specific.

All other Sub-Diseases include recommendations specific to existing NINDS CDE project disorders.

Participant Characteristics
Demographics
CRF/Module Guidance CDEs
General Core CDE Details
Demographics CDE Details
Disease/Injury Related Events
History of Disease/Injury Event
CRF/Module Guidance CDEs
Medical History of Parkinson's Disease CDE Details
Assessments and Examinations
Other Clinical Data
CRF/Module Guidance CDEs
National Alzheimer's Coordinating Center (NACC) Neuropathology Data Form N/A
Laboratory Tests and Biospecimens/Biomarkers
CRF/Module Guidance CDEs
NINDS Repository Parkinsonism Data Elements N/A
Parkinson's Disease Genetics CDE Details
Treatment/Intervention Data
Outcomes and End Points
Digital Technology
CRF/Module Guidance CDEs
Best Practices for Digital Health Outcomes N/A
Guidance for Digital Data Sharing N/A
Other Non-Motor
CRF/Module Guidance CDEs
Other Non-Motor Guidance for CDE Use CDE Details
Actigraphy (with Sleep Diary) N/A
Berlin Questionnaire CDE Details
Brief Pain Inventory (BPI) Short Form CDE Details
Brief Smell Identification Test (Brief-SIT) N/A
Composite Autonomic Symptom Scale (COMPASS-31) N/A
Constipation Severity Scale (CSS) N/A
Drooling Rating Scale (DRS) N/A
Drooling Severity and Frequency Scale (DSFS) CDE Details
Epworth Sleepiness Scale (ESS) - Adult Version CDE Details
Fatigue Severity Scale (FSS) CDE Details
Female Sexual Function Index (FSFI) N/A
Gastrointestinal Symptoms in Neurodegenerative Diseases Scale (GIND) N/A
Hyposmia Rating Scale (HRS) N/A
Innsbruck REM Sleep Behavior Disorder Inventory (RBD-I-5) N/A
Insomnia Severity Index (ISI) CDE Details
International Consultation on Incontinence Modular Questionnaire-Overactive Bladder (ICIQ-OAB) N/A
International Consultation on Incontinence Questionnaire (ICIQ) Bladder Diary N/A
International Index of Erectile Function-5 (IIEF-5) N/A
International Prostate Symptom Scale (IPSS) N/A
International Restless Legs Syndrome Study Group Severity Rating Scale (IRLS) N/A
Karolinska Sleepiness Scale (KSS) N/A
King's Parkinson's Disease Pain Questionnaire (KPPQ) N/A
King's Parkinson's Disease Pain Scale (KPPS) N/A
Mayo Sleep Questionnaire (MSQ) N/A
Mini Nutritional Assessment (MNA) CDE Details
Multiple Sleep Latency Test (MSLT) and Guidelines N/A
Munich Dysphagia Test - Parkinson's Disease (MDT-PD) N/A
Neurogenic Bladder Symptom Score (NBSS) N/A
Non-Motor Symptom Questionnaire (NMS-Quest) (PD-NMS) CDE Details
Numeric Rating Scale (NRS)-Box 21 Scale N/A
Orthostatic Hypotension Questionnaire (OHQ) N/A
Orthostatic Symptom Grading Scale N/A
Parkinson's Disease Fatigue Scale (PFS-16) N/A
Parkinson's Disease Sleep Scale 2nd Version (PDSS-2) CDE Details
Pelli Robson Test N/A
Pittsburgh Sleep Quality Index (PSQI) CDE Details
Polysomnography (PSG) and Guidelines N/A
Quality of Life in Swallowing Disorders (SWAL-QOL) CDE Details
Radboud Oral Motor Inventory for Parkinson's Disease (ROMP) N/A
Rome III/IV Constipation Module CDE Details
Scale for Outcomes in Parkinson's Disease Autonomic (SCOPA-AUT) CDE Details
Scale for Outcomes in Parkinson's Disease-Sleep (SCOPA-SLEEP) CDE Details
Sialorrhea Clinical Scale for Parkinson's Disease (SCS-PD) CDE Details
Sniffin' Sticks Test N/A
Stanford Sleepiness Scale (SSS) CDE Details
STOP-BANG Questionnaire N/A
Swallowing Disturbance Questionnaire (SDQ) CDE Details
The American Academy of Sleep Medicine (AASM): International Classification of Sleep Disorders (ICSD) Criteria N/A
The Gastrointestinal Dysfunction Scale for Parkinson's Disease N/A
The International Association for the Study of Pain (IASP) Definitions for Pain N/A
The International Parkinson and Movement Disorder Society - Non-Motor Rating Scale (MDS-NMS) N/A
The International Parkinson and Movement Disorder Society - Non-Motor Rating Scale (MDS-NMS) (GI Domain) N/A
The International Restless Legs Syndrome Study Group Diagnostic Criteria N/A
The REM Sleep Behavior Disorder (RBD) Questionnaire - Hong Kong (RBDQ-HK) N/A
The REM Sleep Behavior Disorder (RBD) Screening Questionnaire (RBDSQ) N/A
The REM Sleep Behavior Disorder Single-Question Screen (RBD1Q) N/A
The Swallowing Clinical Assessment Score in Parkinson's Disease (SCAS-PD) N/A
University of Pennsylvania Smell Identification Test (UPSIT) N/A
Visual Impairment in Parkinson's Disease Questionnaire (VIPD-Q) N/A
Psychiatric and Psychological Functions
CRF/Module Guidance CDEs
15 - Item Geriatric Depression Scale (GDS-15) N/A
Apathy Motivation Index (AMI) N/A
Apathy Motivation Index Caregiver Version (AMI-CG) N/A
Apathy Scale (AS) CDE Details
Beck Depression Inventory II (BDI-II) CDE Details
Brief Dimensional Apathy Scale (b-DAS) N/A
Brief Psychiatric Rating Scale (BPRS) CDE Details
Columbia - Suicide Severity Rating Scale (C-SSRS) N/A
Columbia - Suicide Severity Rating Scale (C-SSRS) Screener Version N/A
Compulsive Eating Scale (CES) N/A
Cornell Scale for Depression in Dementia (CSDD) N/A
Diagnostic and Statistical Manual of Mental Disorders (DSM-5) N/A
Dimensional Apathy Scale (DAS) N/A
Dimensional Apathy Scale (DAS) Informant/Carer-Rated Version N/A
Enhanced Scale for the Assessment of Positive Symptoms in Parkinson's Disease (eSAPS-PD) N/A
Gambling Symptom Assessment Scale (G-SAS) CDE Details
Hamilton Anxiety Rating Scale (HAM-A) CDE Details
Hamilton Depression Rating Scale (HDRS) N/A
Hospital Anxiety and Depression Scale (HADS) N/A
Lille Apathy Rating Scale (LARS) N/A
McElroy Diagnostic Criteria for Compulsive Buying N/A
Montgomery-Asberg Depression Scale (MADRS) N/A
Neuropsychiatric Inventory (NPI) N/A
Parkinson Anxiety Scale (PAS) N/A
Parkinson's Psychosis Questionnaire (PPQ) N/A
Parkinson's Psychosis Rating Scale (PPRS) N/A
Pathological Gambling Adaptation of the Yale-Brown Obsessive Compulsive Scale (PG-YBOCS) N/A
Patient Health Questionnaire - 2 (PHQ-2) N/A
Patient Health Questionnaire - 9 (PHQ-9) Depression Scale CDE Details
Psychosis and Hallucinations Questionnaire (PsycH-Q) N/A
Questionnaire about Buying Behavior (QABB) CDE Details
Questionnaire for Impulsive-Compulsive Disorders in Parkinson's Disease (QUIP) (Long Form) CDE Details
Questionnaire for Impulsive-Compulsive Disorders in Parkinson's Disease (QUIP) (Short Form) CDE Details
Questionnaire Impulsive-Compulsive Disorders Parkinson's Disease-Rating Scale (QUIP-RS) N/A
Scale for the Assessment of Positive Symptoms (SAPS) CDE Details
Scale for the Assessment of Positive Symptoms-Parkinson's Disease (SAPS-PD) N/A
Sexual Compulsivity Scale (SCS) CDE Details
South Oaks Gambling Screen (SOGS) CDE Details
Summary of Diagnostic Criteria and Assessments for Psychosis in Parkinson's Disease N/A

Overview

The National Institute of Neurological Disorders and Stroke (NINDS) convened the Parkinson's Disease (PD) v1.0 Common Data Elements (CDE) Working Group (WG) in 2009. The PD v1.0 CDE WG brought together over 50 experts from nine countries divided into 12 subgroups/specialty areas. The subgroups defined the CDEs for their domains and recommended standardized, validated instruments for PD research. The first set of CDEs for PD was completed in 2010.

The PD CDE Oversight Committee (OC) was created in 2016 to periodically review, direct the updating, and advance the development of PD CDEs.

In 2021, the PD v2.0 CDE WG was convened to perform a comprehensive review and update of the PD CDEs. The WG was divided into 11 domain-specific subgroups and a biostatistician served as a consultant on scale metrics and statistics. The PD v2.0 CDE recommendations were posted in August 2022.

PD v2.0 CDE Subgroups:

  • Cognitive
  • Digital Technology
  • Epidemiology and Environment
  • Functional Neurosurgery
  • General and Motor
  • Genetics
  • Imaging
  • Neuropathology
  • Other Non-Motor
  • Psychiatry
  • Quality of Life

Roster

Members of the Parkinson’s Disease v2.0 CDE Working Group by subgroup, current members of the Oversight Committee, and the NINDS CDE Team are listed below. A roster spreadsheet can be downloaded from this link: Complete Version 2.0 Parkinson's Disease CDE Working Group Roster

Complete Version 1.0 Parkinson’s Disease CDE Working Group Roster – Lists members of the Parkinson’s Disease v1.0 CDE Working Group by subgroup, previous members of the Oversight Committee, and the NINDS CDE Team.

Please see the Overview tab for additional project background and timeline information.

Oversight Committee Members

Oversight Committee Members

  • Mark Hallett, MD
    National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH), Bethesda, Maryland
    Co-Chair
  • Irene Litvan, MD
    University of California, San Diego, La Jolla, California
    Co-Chair
  • James Beck, PhD
    Parkinson's Foundation, New York, New York
  • Helen Bronte-Stewart, MD, MS
    Stanford University School of Medicine, Stanford, California
  • Jesse Cedarbaum, MD
    Coeruleus Clinical Sciences LLC, Woodbridge, Connecticut
  • Stanley Fahn, MD
    Columbia University Medical Center, New York, New York
  • Christopher Goetz, MD
    Rush University Medical Center, Chicago, Illinois
  • Michael Okun, MD
    University of Florida, Gainesville, Florida
  • Paul Rohrlich, PhD (Until 2019)
    Parkinson's Foundation, Falls Church, Virginia
  • Kathleen Shannon, MD, FAAN, FANA
    University of Wisconsin, Madison, Wisconsin
  • Daniel Weintraub, MD
    Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania

Working Group Co-Chairs Version 2.0

Working Group Co-Chairs Version 2.0

  • Tanya Simuni, MD
    Northwestern University Feinberg School of Medicine, Chicago, Illinois
  • Caroline Tanner, MD, PhD
    University of California, San Francisco, San Francisco, California

Cognitive Subgroup Version 2.0

Cognitive Subgroup Version 2.0

  • Irene Litvan, MD
    University of California, San Diego, La Jolla, California
    Co-Chair
  • Daniel Weintraub, MD
    Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania
    Co-Chair
  • Dag Aarsland, MD, PhD
    King's College, London, United Kingdom
  • Sule Tinaz, MD, PhD
    Yale School of Medicine, New Haven, Connecticut
  • Alexander Troster, PhD
    Barrow Neurological Institute, Phoenix, Arizona

Digital Technology Subgroup Version 2.0

Digital Technology Subgroup Version 2.0

  • Fay Horak, PhD, PT
    Oregon Health and Science University, Portland, Oregon
    Chair
  • Jamie Adams, MD
    University of Rochester, Rochester, New York
  • Paolo Bonato, PhD
    Harvard Medical School, Boston, Massachusetts
  • Jean-Francois Daneault, PhD
    Rutgers University, Newark, New Jersey
  • Kelley Erb, PhD
    Biogen Digital Health, Cambridge, Massachusetts
  • Jennifer Goldsack, MChem, MA, MBA, OLY
    Digital Medicine Society (DiMe), Boston, Massachusetts (ad hoc)
  • Dina Katabi, PhD
    MIT Computer Science & Artificial Intelligence Lab, Cambridge, Massachusetts
  • Larsson Omberg, PhD
    Sage Bionetworks, Seattle, Washington

Epidemiology and Environment Subgroup Version 2.0

Epidemiology and Environment Subgroup Version 2.0

  • Yoav Ben-Shlomo, MBBS, PhD
    University of Bristol, Bristol, United Kingdom
    Co-Chair
  • Webster Ross, MD
    Pacific Health Research Institute, Honolulu, Hawaii
    Co-Chair
  • Alberto Ascherio, MD, DrPh
    Harvard School of Public Health, Boston, Massachusetts
  • Caroline Tanner, MD, PhD
    University of California, San Francisco, San Francisco, California
  • Allison Willis, MD, MS
    Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania

Functional Neurosurgery Subgroup Version 2.0

Functional Neurosurgery Subgroup Version 2.0

  • Philip Starr, MD
    University of California, San Francisco, San Francisco, California
    Chair
  • Helen Bronte-Stewart, MD, MS
    Stanford University School of Medicine, Stanford, California
  • Svjetlana Miocinovic, MD, PhD
    Emory University School of Medicine, Atlanta, Georgia
  • Sameer Sheth, MD, PhD
    Baylor College of Medicine, Houston, Texas

General and Motor Subgroup Version 2.0

General and Motor Subgroup Version 2.0

  • Christopher Goetz, MD
    Rush University Medical Center, Chicago, Illinois
    Chair
  • Piu (Bill) Chan, MD
    Capital Medical University, Beijing, China
  • Michael Schwarzschild, MD, PhD
    Massachusetts General Hospital, Boston, Massachusetts
  • Holly Shill, MD
    Barrow Neurological Institute, Phoenix, Arizona
  • Tanya Simuni, MD
    Northwestern University Feinberg School of Medicine, Chicago, Illinois
  • Glenn Stebbins, PhD
    Rush University Medical Center, Chicago, Illinois (ad hoc)

Genetics Subgroup Version 2.0

Genetics Subgroup Version 2.0

  • Sonja Scholz, MD, PhD
    National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH), Bethesda, Maryland
    Chair
  • Susan Bressman, MD
    Mount Sinai Hospital, New York, New York
  • Mark Fraiser, PhD
    The Michael J. Fox Foundation, New York, New York
  • Christine Klein, MD, PhD
    University of Luebeck, Luebeck, Germany
  • Ignacio Mata, PhD
    Cleveland Clinic, Cleveland, Ohio
  • Marta San Luciano, MD, MS
    University of California, San Francisco, San Francisco, California

Imaging Subgroup Version 2.0

Imaging Subgroup Version 2.0

  • Kenneth Marek, MD
    Institute for Neurodegenerative Disorders, New Haven, Connecticut
    Chair
  • Andrew Feigin, MD
    NYU Langone Health, New York, New York
  • Silvina Horovitz, PhD
    National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH), Bethesda, Maryland
  • Joel Perlmutter, MD
    Washington University, St Louis, Missouri
  • Kathleen Poston, MD, MS
    Stanford University, Stanford, California
  • Klaus Seppi, MD
    Medical University Innsbruck, Innsbruck, Austria

Neuropathology Subgroup Version 2.0

Neuropathology Subgroup Version 2.0

  • Dennis Dickson, MD
    Mayo Clinic Florida, Jacksonville, Florida
    Chair
  • Irina Alafuzoff, MD, PhD
    Uppsala University, Uppsala, Sweden
  • John Duda, MD
    Philadelphia VA Medical Center, Philadelphia, Pennsylvania
  • Glenda Halliday, PhD
    University of Sydney, Sydney, Australia

Other Non-Motor Subgroup Version 2.0

Other Non-Motor Subgroup Version 2.0

  • Horacio Kaufmann, MD
    NYU Langone Health, New York, New York
    Chair
  • Leslie Cloud, MD, MSc
    Virginia Commonwealth University, Richmond, Virginia (ad hoc)
  • David Goldstein, MD, PhD
    National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH), Bethesda, Maryland (ad hoc)
  • Samantha Holden, MD
    University of Colorado Anschutz Medical Center, Aurora, Colorado
  • Alex Iranzo, MD, PhD
    Hospital Clinic de Barcelona/Universitat de Barcelona, Barcelona, Spain
  • Jalesh Panicker, MD
    The National Hospital for Neurology and Neurosurgery, Queen Square, London, United Kingdom (ad hoc)
  • Ronald Pfeiffer, MD
    Oregon Health & Science University Parkinson Center of Oregon and Movement Disorder Clinic, Portland, Oregon (ad hoc)
  • Wolfgang Singer, MD
    Mayo Clinic, Rochester, Minnesota (ad hoc)
  • Aleksandar Videnovic, MD, MSc
    Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts

Psychiatry Subgroup Version 2.0

Psychiatry Subgroup Version 2.0

  • Gregory Pontone, MD
    Johns Hopkins University School of Medicine, Baltimore, Maryland
    Chair
  • Laura Marsh, MD
    Baylor College of Medicine, Michael E. DeBakey Veterans Affairs Medical Center, Houston, Texas
  • William McDonald, MD
    Emory University School of Medicine, Atlanta, Georgia
  • Laura Rowland, PhD
    National Institute of Mental Health (NIMH), National Institutes of Health (NIH), Bethesda, Maryland

Quality of Life Subgroup Version 2.0

Quality of Life Subgroup Version 2.0

  • Anette Schrag, MD, PhD
    UCL Queen Square Institute of Neurology, London, United Kingdom
    Chair
  • Cindy Nowinski, MD, PhD
    Northwestern University, Chicago, Illinois
  • Lisa Shulman, MD
    University of Maryland Medical Center, Baltimore, Maryland
  • Elizabeth Stegemoller, PhD, MT-BC
    Iowa State University, Ames, Iowa

Scale Metrics and Statistics Consultant Version 2.0

Scale Metrics and Statistics Consultant Version 2.0

  • Sharon Xie, PhD
    Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania

NINDS CDE Team

NINDS CDE Team

  • Codrin Lungu, MD
    National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH), Bethesda, Maryland
  • M. Carolina Mendoza-Puccini, MD
    NINDS CDE Program Officer, National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH), Bethesda, Maryland
  • Beth-Anne Sieber, PhD
    National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH), Bethesda, Maryland
  • Sherita Ala'i Hansen, MS (Until 2018)
    The Emmes Company, LLC, Rockville, Maryland
  • Clara Aman, BS
    The Emmes Company, LLC, Rockville, Maryland
  • Damon Collie, MSHS
    The Emmes Company, LLC, Rockville, Maryland
  • Joy Esterlitz, MS (Until 2020)
    The Emmes Company, LLC, Rockville, Maryland
  • Robin Feldman, BS, MBA
    The Emmes Company, LLC, Rockville, Maryland
  • Andy Franklin, BA
    The Emmes Company, LLC, Rockville, Maryland
  • Katelyn Gay, BS
    The Emmes Company, LLC, Rockville, Maryland
  • Cameron Meis, BA
    The Emmes Company, LLC, Rockville, Maryland
  • Muniza Sheikh, MS, MBA
    The Emmes Company, LLC, Rockville, Maryland

Publications

A publication related to the Parkinson’s Disease CDE initiative will be written at a later date. The citation for this publication will be included on this site as soon as it is available.

Updates

Please see attached revision history document. Please contact NINDSCDE@emmes.com if you require further information or have any questions about the revision history.

Parkinson’s Disease CDEs Revision History