Mitochondrial Disease

Coming Soon: Public Review for Mitochondrial Disease Version 2.0 CDEs
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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)

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

Mitochondrial Disease Highlight Summary: Overview of all Mitochondrial 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.

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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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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.

NIH Resources
NIH Resources
CRF Module/Guidance CDEs
National Institutes of Health (NIH) Toolbox N/A
Patient-Reported Outcomes Measurement Information System (PROMIS) N/A
Quality of Life in Neurological Disorders (Neuro-QOL) N/A
Overview of Working Group Recommendations
Summary Documents
CRF Module/Guidance CDEs
Mitochondrial Disease CDE Summary N/A
Biomarkers Working Group Summary Document N/A
Cognitive/Behavioral/Psychological Working Group Summary Document N/A
Endocrinology/Diabetes/Gastrointestinal/Nutrition Working Group Summary Document N/A
Exercise Physiology Working Group Summary Document N/A
Genetics Working Group Summary Document N/A
Imaging Working Group Summary Document N/A
Neurological Assessments Working Group Summary Document N/A
Patient Reported Outcome/Quality of Life Working Group Summary Document N/A
Vision Working Group Summary Document N/A
Participant Characteristics
Demographics
CRF Module/Guidance CDEs
General Core CDE Details
Participant History and Family History
General Health History
CRF Module/Guidance CDEs
Diabetes-Related Medical History CDE Details
Dietary Supplements CDE Details
Reproductive and Hormonal History CDE Details
Assessments and Examinations
Non-Imaging Diagnostics
CRF Module/Guidance CDEs
Holter Examination CDE Details
Electrocardiogram (ECG) CDE Details
Physical Examinations
CRF Module/Guidance CDEs
Mitochondrial and Gastrointestinal Diseases Assessment CDE Details
Automated Self-Administered 24-hour Dietary Recall (ASA 24) N/A
Vision
CRF Module/Guidance CDEs
Mitochondrial Disease OCT Guidelines N/A
Mitochondrial Disease Test Guidelines N/A
Mitochondrial Disease Visual Electrophysiology Guidelines N/A
Mitochondrial Disease Visual Fields Guidelines N/A
Vital Signs and Other Body Measures
CRF Module/Guidance CDEs
Vital Signs CDE Details
Laboratory Tests and Biospecimens/Biomarkers
CRF Module/Guidance CDEs
Laboratory Tests and Non-Imaging Diagnostics (Diabetes) CDE Details
Genetics Testing Short Form CDE Details
Genetics Testing Clinical Diagnostics CDE Details
Biomarkers Guidelines Mitochondrial Disease N/A
Biomarkers in Mitochondrial Disease CDE Details
Imaging Diagnostics
CRF Module/Guidance CDEs
Imaging - Mitochondrial Disease CDE Details
Imaging Guidelines and Definitions N/A
Brain Magnetic Resonance Imaging (MRI) CDE Details
Brain Perfusion Magnetic Resonance Imaging CDE Details
Cardiac Magnetic Resonance Imaging (MRI) CDE Details
Echocardiogram CDE Details
Phosphorus Magnetic Resonance Spectroscopy (31PMRS) CDE Details
Two Dimensional Speckle Tracking Echocardiography Imaging CDE Details
Outcomes and End Points
Motor Function
CRF Module/Guidance CDEs
2 Minute Walk Test N/A
6 Minute Walk Test N/A
Alberta Infant Motor Scale N/A
Barry Albright Dystonia Scale (BADS) N/A
Beery-Buktenica Developmental Test of Visual-Motor Integration (Beery VMI) N/A
Borg Rating of Perceived Exertion (RPE) Scale N/A
Burke-Fahn-Marsden Movement Scale (BFMMS) N/A
Gross Motor Function Measure (GMFM-88, GMFM-66) N/A
International Pediatric Mitochondrial Disease Score (IPMDS) N/A
Modified Hammersmith Functional Motor Scale for Children with Spinal Muscular Atrophy (MHFMS-SMA/MHFMS-Extend) N/A
Motor Function Measure (MFM) N/A
Newcastle Mitochondrial Disease Adult Scale N/A
Newcastle Pediatric Mitochondrial Disease Scale (NPMDS) N/A
Peabody Developmental Motor Scale Second Edition (PDMS-2) N/A
Physical Activity Questionnaire for Adolescents (PAQ-A) N/A
Physical and Neurological Examination for Subtle Signs (PANESS) N/A
Unified Dystonia Rating Scale (UDRS) N/A
Adaptive
CRF Module/Guidance CDEs
Adaptive Behavior Assessment Scale (ABAS-II) N/A
Delis-Kaplan Executive Function System (D-KEFS) N/A
Vineland Adaptive Behavior Scales, second edition (Vineland-II) N/A
Emotional/Behavioral
CRF Module/Guidance CDEs
ALS Depression Inventory (ADI-12) N/A
Apathy Evaluation Scale N/A
Apathy Scale (AS) N/A
Autism Diagnostic Interview (ADI) N/A
Autism Diagnostic Observation Schedule (ADOS) N/A
Beck Anxiety Inventory (BAI) N/A
Brief Infant Toddler Social Emotional Assessment (BITSEA) N/A
Brief Psychiatric Rating Scale (BPRS) CDE Details
Cambridge Behavioral Inventory - Revised N/A
Center for Epidemiologic Studies-Depression Scale (CES-D) CDE Details
Child Behavior Checklist (CBCL) N/A
Child Depression Inventory (CDI) N/A
Children's Depression Inventory - 2 (CDI-2) N/A
Columbia - Suicide Severity Rating Scale (C-SSRS) N/A
Diagnostic and Statistical Manual of Mental Disorders (DSM-5) N/A
Generalized Anxiety Disorder (GAD-7) N/A
Hamilton Anxiety Rating Scale (HAM-A) CDE Details
Hamilton Depression Rating Scale (HDRS) CDE Details
Irritability Scale N/A
Modified Overt Aggression Scale (MOAS) N/A
Montgomery-Asberg Depression Scale (MADRS) N/A
Mood Disorder Questionnaire (MDQ) N/A
Problem Behaviours Assessment HD - Short Version (PBA-s) N/A
Social Responsiveness Scale (SRS) N/A
Academic Achievement
CRF Module/Guidance CDEs
American National Adult Reading Test (AmNART) N/A
Cognitive
CRF Module/Guidance CDEs
Automated Neuropsychological Assessment Metrics (ANAM) N/A
Axon Sports Computerized Cognitive Assessment Tool (CCAT) N/A
Brief Test of Adult Cognition by Telephone (BTACT) CDE Details
Cambridge Cognitive Assessment-Revised (CAMCOG-R) N/A
Neuropsychological Testing
CRF Module/Guidance CDEs
Bayley Scales of Infant Development (Bayley III, BSID) N/A
Executive Functioning
CRF Module/Guidance CDEs
Behavior Rating Inventory of Executive Function (BRIEF) - Second Edition (BRIEF-2) N/A
Behavior Rating Inventory of Executive Function- Preschool Version (BRIEF-P) N/A
Language
CRF Module/Guidance CDEs
Boston Diagnostic Aphasia Exam (BDAE-III) N/A
Boston Naming Test (BNT) - 30-item version N/A
Clinical Evaluation of Language Fundamentals - Fifth Edition (CELF-5) N/A
Comprehensive Assessment of Spoken Language (CASL) N/A
Expressive One-Word Picture Vocabulary Test N/A
New Reynell Developmental Language Scale (NRDLS) N/A
Peabody Picture Vocabulary Test 4th Edition (PPVT-4) N/A
Preschool Language Scales - Fifth Edition (PLS-5) N/A
Quality of Life/Patient Reported Outcomes
CRF Module/Guidance CDEs
Child and Adolescent Scale of Environment (CASE) N/A
Child and Adolescent Scale of Participation (CASP) N/A
Craig Handicap and Assessment Reporting Technique (CHART-SF) - Interview version N/A
Craig Handicap and Assessment Reporting Technique (CHART-SF) - Paper version N/A
EuroQoL-5 Dimension Questionnaire (EQ-5D) CDE Details
Family Strain Questionnaire Assessment of Preschooled Children's Participation N/A
Patient-Reported Outcomes Measurement Information System (PROMIS) N/A
Pediatric Quality of Life Inventory (PEDSQL) N/A
Pediatric Quality of Life Inventory, Multidimensional Fatigue Scale N/A
Quality of Life in Neurological Disorders (Neuro-QOL) N/A
Short Form 36-Item Health Survey (SF-36) N/A
World Health Organization Quality of Life Assessment (WHOQOL-BREF) N/A
Attention
CRF Module/Guidance CDEs
Conners Continuous Performance Test 3rd Edition (Conners CPT 3) N/A
Delis-Kaplan Executive Function System (D-KEFS) N/A
National Institutes of Health (NIH) Toolbox N/A
Test of Variables of Attention (TOVA) N/A
Dementia
CRF Module/Guidance CDEs
Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE) N/A
Montreal Cognitive Assessment (MoCA) N/A
Ataxia and Performance Measures
CRF Module/Guidance CDEs
International Cooperative Ataxia Rating Scale (ICARS) N/A
Scale for the Assessment and Rating of Ataxia (SARA) N/A
Visual-Spatial Processing
CRF Module/Guidance CDEs
Judgment of Line Orientation (Benton JLO) N/A
Intellectual Functioning
CRF Module/Guidance CDEs
Kaufman Assessment Battery for Children N/A
Leiter International Performance Scale-3 (Leiter-3) N/A
Reynolds Intellectual Assessment Scale (RIAS) N/A
Wechsler Abbreviated Scale of Intelligence (WASI) N/A
Wechsler Adult Intelligence Scale - Fourth Edition (WAIS-IV) N/A
Wechsler Intelligence Scale for Children-V (WISC-V) N/A
Wechsler Memory Scale IV (WMS-IV) N/A
Wechsler Preschool and Primary Scale of Intelligence (WPPSI-III) N/A
Muscle Strength Testing
CRF Module/Guidance CDEs
Manual Muscle Testing-Using the Medical Research Council Muscle Grading Scale CDE Details
Maximum Voluntary Isometric Contraction Testing (MVICT) N/A
Memory
CRF Module/Guidance CDEs
Memory Assessment Scale N/A
Pulmonary Function Testing/Respiratory Status
CRF Module/Guidance CDEs
Pulmonary Function CDE Details

Prospective Assessments for Suicidal Ideation and Behavior

Investigators should review the FDA’s "Guidance for Industry: Suicidal Ideation and Behavior: Prospective Assessment of Occurrence in Clinical Trials” for the most up-to-date information about suicidal ideation and behavior. One scale that FDA suggests is the Columbia Suicide Severity Rating Scale (C-SSRS) (available at https://cssrs.columbia.edu/).

Instrument Notice of Copyright Information

The NINDS CDE Team does not post proprietary instruments/scales recommended by the CDE Working Groups on this website. This includes, but is not limited to, copyrighted or trademarked instruments/scales. Information about recommended instruments can be found in the Notice of Copyright (NOC) documents under ‘CRF Module/Guidance’ on each disorder’s data standards page. For any questions regarding these instruments/scales please contact the corresponding owner/author. The NINDS CDE Team is not responsible for the availability or content of these external sites, nor does the NINDS CDE Team endorse, warrant or guarantee the products, services or information described or offered at these other internet sites.

Overview

The National Institute of Neurological Disorders and Stroke (NINDS) convened the Mitochondrial Disease v1.0 Common Data Elements (CDE) Working Group (WG) in 2014. The Mitochondrial Disease v1.0 CDE WG was divided into 9 domain-specific subgroups. The first set of CDEs for Mitochondrial Disease was completed in 2015.

The Mitochondrial Disease CDE Oversight Committee (OC) was created in 2018 to periodically review, direct the updating, and advance the development of Mitochondrial Disease CDEs.

In 2022, the Mitochondrial Diseases v2.0 CDE WG was convened to perform a comprehensive review and update of the Mitochondrial Disease v1.0 CDEs. The WG was divided into 11 domain-specific subgroups.

Mitochondrial Disease v2.0 CDE Subgroups:

  • Audiology Outcomes
  • Biomarkers
  • Cognitive/Psychological Outcomes
  • Endocrinology
  • Exercise Physiology
  • GI/Hepatology and Nutrition
  • General Medical/Neurological Assessments
  • Genetics
  • Imaging
  • Ophthalmology Outcomes
  • PRO/QoL/Fatigue

The Mitochondrial Disease v2.0 CDE draft recommendations are scheduled for an internal/public review and comment period in late 2023.

Roster

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

Complete Version 1.0 Mitochondrial Disease CDE Working Group Roster – Lists members of the Mitochondrial Disease v1.0 CDE Working Group by subgroup, previous members of the NIH Coordinating Team and the NINDS CDE Team.

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

Oversight Committee Members

Oversight Committee Members

  • Michio Hirano, MD
    Columbia University Medical Center, New York, New York
    Co-Chair
  • Lynne A. Wolfe, MS, CRNP, BC
    National Human Genome Research Institute (NHGRI), National Institutes of Health (NIH), Bethesda, Maryland
    Co-Chair
  • Marni Falk, MD
    The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania
  • Russel Saneto, DO, PhD
    Seattle Children's Hospital, Seattle, Washington
  • John Shoffner, MD
    Atlanta, Georgia
  • Johan Van Hove, MD, PhD, MBA
    University of Colorado, Aurora, Colorado
  • Jerry Vockley, MD, PhD
    University of Pittsburgh, Children's Hospital of Pittsburgh, Pittsburgh, Pennsylvania
  • Philip Yeske, PhD
    United Mitochondrial Disease Foundation, Pittsburgh, Pennsylvania

Working Group Co-Chairs Version 2.0

Working Group Co-Chairs Version 2.0

  • Michio Hirano, MD
    Columbia University Medical Center, New York, New York
  • Lynne A. Wolfe, MS, CRNP, BC
    National Human Genome Research Institute (NHGRI), National Institutes of Health (NIH), Bethesda, Maryland

Audiology Outcomes Subgroup Version 2.0

Audiology Outcomes Subgroup Version 2.0

  • Carolyn Sue, MBBS, PhD
    Neuroscience Research Australia (NeuRA), Sydney, Australia
    Chair
  • Gregory Flamme, PhD
    Stephenson and Stephenson Research and Consulting (SASRAC), Forest Grove, Oregon
  • Margaret Kenna, MD, MPH
    Boston Children's Hospital, Boston, Massachusetts
  • Sharon Kujawa, PhD, CCC-A
    Harvard Medical School, Mass Eye and Ear, Boston, Massachusetts
  • Tomoko Makishima, MD, PhD
    The University of Texas Medical Branch, Galveston, Texas
  • Gayla L. Poling, PhD
    Mayo Clinic, Rochester, Minnesota
  • Kelly Reavis, PhD, MPH, CCC-A
    National Center for Rehabilitative Auditory Research, Veterans Affairs Portland Health Care System, Portland, Oregon
  • Lisa Schimmenti, MD
    Mayo Clinical, Rochester, Minnesota
  • Christopher Zalewski, PhD
    National Institute on Deafness and Other Communication Disorders (NIDCD), National Institutes of Health (NIH), Bethesda, Maryland

Biomarkers Subgroup Version 2.0

Biomarkers Subgroup Version 2.0

  • Kimberly Chapman, MD, PhD
    Children's National Medical Center, Washington, District of Columbia
    Co-Chair
  • Fernando Scaglia, MD
    Baylor College of Medicine, Houston, Texas
    Co-Chair
  • Sarah Elsea, PhD
    Baylor College of Medicine, Houston, Texas
  • Devin Oglesbee, PhD
    Mayo Clinic, Rochester, Minnesota
  • Rohit Sharma, MD, PhD
    Massachusetts General Hospital, Boston, Massachusetts

Cognitive/Psychological Outcomes Subgroup Version 2.0

Cognitive/Psychological Outcomes Subgroup Version 2.0

  • Stephanie Assuras, PhD
    Columbia University Medical Center, New York, New York
    Chair
  • Lisa Emrick, MD
    Baylor College of Medicine, Houston, Texas
  • Emily Leaffer, PhD, MPH
    Northeast Cognitive Assessment, LLC, Rye Brook, New York
  • Rebecca Vaurio, PhD
    Children's of Minnesota, St. Paul, Minnesota

Endocrinology Subgroup Version 2.0

Endocrinology Subgroup Version 2.0

  • Shana McCormack, MD, MTR
    Children's Hospital of Philadelphia, Philadelphia, Pennsylvania
    Chair
  • Jose E. Abdenur, MD
    Children's Hospital of Orange County, Orange, California
  • Timothy Cheetham, MBChB, MD
    Newcastle University, Newcastle upon Tyne, United Kingdom
  • Jane Estrella, MD, FRACP, MMed
    PathWest, Perth, Australia
  • Bret Goodpaster, PhD
    Advent Health Research Institute, Orlando, Florida
  • Jaclyn Tamaroff, MD
    Monroe Carell Jr. Children's Hospital at Vanderbilt, Nashville, Tennessee
  • Fumihiko Urano, MD, PhD
    Washington University in St. Louis, St. Louis, Missouri
  • David Weber, MD
    Children's Hospital of Philadelphia, Philadelphia, Pennsylvania
  • Jarod Wong, MD
    University of Glasgow, Glasgow, United Kingdom

Exercise Physiology Subgroup Version 2.0

Exercise Physiology Subgroup Version 2.0

  • Tanja Taivassalo, PhD
    University of Florida, Gainesville, Florida
    Chair
  • Ronald Haller, MD
    University of Texas Southwestern Medical Center, Dallas, Texas
  • Russell Saneto, DO, PhD
    Seattle Children's Hospital, Seattle, Washington
  • Mark Tarnopolsky, MD, PhD
    McMaster University, Exerkine Corporation, Hamilton, Ontario, Canada
  • Zarazuela Zolkipli-Cunningham, MBChB, MRCP
    Children's Hospital of Philadelphia, Philadelphia, Pennsylvania

General Medical/Neurological Assessments Subgroup Version 2.0

General Medical/Neurological Assessments Subgroup Version 2.0

  • Bruce H. Cohen, MD, FAAN
    Akron Children's Hospital, Akron, Ohio
    Chair
  • Richard Haas, MB, BChir
    University of California, San Diego, La Jolla, California
  • Margherita Milone, MD, PhD
    Mayo Clinic, Rochester, Minnesota
  • Ingrid Tein, MD, FRCPC
    University of Toronto, Toronto, Canada

Genetics Subgroup Version 2.0

Genetics Subgroup Version 2.0

  • William Copeland, PhD
    National Institute of Environmental Health Sciences (NIEHS), National Institutes of Health (NIH), Research Triangle Park, North Carolina
    Chair
  • Valerio Carelli, MD, PhD
    University of Bologna School of Medicine, Bologna, Italy
  • Xiaowu Gai, PhD
    Keck School of Medicine of USC, Children's Hospital of Los Angeles, Los Angeles, California
  • Amel Karaa, MD
    Massachusetts General Hospital for Children, Boston, Massachusetts
  • Peter McGuire, MS, MBBCh
    National Human Genome Research Institute (NHGRI), National Institutes of Health (NIH), Bethesda, Maryland
  • Colleen Clarke Muraresku, MS, LCGC
    Children's Hospital of Philadelphia, Philadelphia, Pennsylvania

GI/Hepatology and Nutrition Subgroup Version 2.0

GI/Hepatology and Nutrition Subgroup Version 2.0

  • Lindsay Burrage, MD, PhD
    Baylor College of Medicine, Houston, Texas
  • Michael Camilleri, MD
    Mayo Clinic, Rochester, Minnesota
  • Maria Mascarenhas, MBBS
    Children's Hospital of Philadelphia, Philadelphia, Pennsylvania
  • Hayat Mousa, MD
    Children's Hospital of Philadelphia, Philadelphia, Pennsylvania
  • Ronald Sokol, MD
    Children's Hospital Colorado, Aurora, Colorado
  • James Squires, MD, MS
    UPMC Children's Hospital of Pittsburgh, Pittsburgh, Pennsylvania

Imaging Subgroup Version 2.0

Imaging Subgroup Version 2.0

  • Amy Goldstein, MD
    Children's Hospital of Philadelphia, Philadelphia, Pennsylvania
    Co-Chair
  • Andrea L. Gropman, MD
    Children's National Medical Center, Washington, District of Columbia
    Co-Chair
  • Cesar Alves, MD, PhD
    Children's Hospital of Philadelphia, Philadelphia, Pennsylvania
  • Raffaele Lodi, MD, PhD
    Bellaria Hospital, University of Bologna, Bologna, Italy
  • Arastoo Vossough, MD, PhD
    Children's Hospital of Philadelphia, Philadelphia, Pennsylvania
  • Matthew Whitehead, MD
    Children's Hospital of Philadelphia, Philadelphia, Pennsylvania

Ophthalmology Outcomes Subgroup Version 2.0

Ophthalmology Outcomes Subgroup Version 2.0

  • Wadih M. Zein, MD
    National Eye Institute (NEI), National Institutes of Health (NIH), Bethesda, Maryland
    Chair
  • Valerio Carelli, MD, PhD
    University of Bologna School of Medicine, Bologna, Italy
  • Kerry Goetz, MS
    National Eye Institute (NEI), National Institutes of Health, Bethesda, Maryland
  • Jimmy Le, ScD
    National Eye Institute (NEI), National Institutes of Health, Bethesda, Maryland
  • David A. Mackey, MBBS, MD
    Lions Eye Institute, Nedlands, Australia

Patient Reported Outcomes/Quality of Life/Fatigue Subgroup Version 2.0

Patient Reported Outcomes/Quality of Life/Fatigue Subgroup Version 2.0

  • Mary Kay Koenig, MD
    University of Texas Health Science Center, Houston, Texas
    Co-Chair
  • Sumit Parikh, MD
    Cleveland Clinic, Cleveland, Ohio
    Co-Chair
  • Cristy Balcells, RN, MSN
    UCB, Asheville, North Carolina
  • Amy Goldstein, MD
    Children's Hospital of Philadelphia, Philadelphia, Pennsylvania
  • Grainne Gorman, MRCP, PhD
    Newcastle University, Newcastle upon Tyne, United Kingdom
  • Amel Karaa, MD
    Massachusetts General Hospital, Boston, Massachusetts
  • Cornelia Kornblum, MD
    University Hospital Bonn, Bonn, Germany
  • Michelangelo Mancuso, MD, PhD
    University of Pisa, Azienda Ospedaliera Universitaria Pisana, Pisa, Italy
  • Philip Yeske, PhD
    United Mitochondrial Disease Foundation, Pittsburgh, Pennsylvania

NIH Coordinating Team

NIH Coordinating Team

  • Adam Hartman, MD, FAAP, FANA, FAES
    National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH), Bethesda, Maryland
  • Peter McGuire, MS, MBBCh
    National Human Genome Research Institute (NHGRI), National Institutes of Health (NIH), Bethesda, Maryland
  • Douglas Meinecke, PhD
    National Institute of Mental Health (NIMH), National Institutes of Health (NIH), Bethesda, Maryland
  • Lynne A. Wolfe, MS, CRNP, BC
    National Human Genome Research Institute (NHGRI), National Institutes of Health (NIH), Bethesda, Maryland

NINDS CDE Team

NINDS CDE Team

  • Adam Hartman, MD, FAAP, FANA, FAES
    National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH), Bethesda, Maryland
  • M. Carolina Mendoza-Puccini, MD
    NINDS CDE Program Director, National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH), Bethesda, Maryland
  • Alva Recinos, MD
    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, MPH
    The Emmes Company, LLC, Rockville, Maryland
  • Damon Collie, MSHS
    The Emmes Company, LLC, Rockville, Maryland
  • Becky Dowd, MSCLS
    The Emmes Company, LLC, Rockville, Maryland
  • Ilar Edun, BA (Until 2020)
    The Emmes Company, LLC, Rockville, Maryland
  • Joy Esterlitz, MS (Until 2020)
    The Emmes Company, LLC, Rockville, Maryland
  • Elias R. Feldman (Until 2015)
    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
  • Ayanna Garland (Until 2014)
    The Emmes Company, LLC, Rockville, Maryland
  • Katelyn Gay, BS
    The Emmes Company, LLC, Rockville, Maryland
  • Marybeth Montoro, MPH, CPH (Until 2015)
    The Emmes Company, LLC, Rockville, Maryland
  • Divya Nigam, BS (Until 2018)
    The Emmes Company, LLC, Rockville, Maryland
  • Shola Ogbodo, BS
    The Emmes Company, LLC, Rockville, Maryland
  • Muniza Sheikh, MS, MBA
    The Emmes Company, LLC, Rockville, Maryland
  • Ian Spector, BS, MPS
    The Emmes Company, LLC, Rockville, Maryland
  • Amanda Suller, BS (Until 2015)
    The Emmes Company, LLC, Rockville, Maryland

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.

Mitochondrial CDE Revision History Document