ME/CFS Common Data Elements Working Group

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NIND CDE.jpg

The Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Common Data Elements (or ME/CFS CDE) project is part of the National Institute of Neurological Disorders and Stroke (NINDS) Common Data Elements project, which involves research into many neurological diseases.[1][2]

Common Data Elements or CDEs are standardized terms or concepts used in clinical or research studies thus allowing the data to be compared and combined across studies.[3]

CDEs may be classified as:[4]

  • Universal - CDEs used in studies regardless of the specific disease or condition of interest such as demographic information;
  • Domain-specific - CDEs designed and intended for use in studies of a particular topic, disease or condition, body system;
  • Required- CDEs that are required or expected, as a matter of institutional policy, to be collected for all subjects;
  • Core - CDEs that are required or expected to be collected in particular classes of studies.

CDE working groups[edit | edit source]

There are 11 subgroups focusing on identifying and defining the common data elements in ME/CFS:[2]

Baseline/Covariate subgroup[edit | edit source]

Co-chairs:[edit | edit source]
Members[edit | edit source]

Fatigue subgroup[edit | edit source]

Chair:[edit | edit source]
  • David Cella, PhD, Northwestern University, Evanston, IL
Members:[edit | edit source]

Post-exertional malaise subgroup[edit | edit source]

Co-chairs:[edit | edit source]

Members:

Sleep subgroup[edit | edit source]

Members:

Pain subgroup[edit | edit source]

Members:

  • Lucinda Bateman, MD, Bateman Horne Center, Salt Lake City, UT
  • Emmeline Edwards, PhD, Division of Extramural Research, National Center for Complementary and Integrative Health (NCCIH), Bethesda, MD
  • Rachael Korinek, Patient Advocate
  • Leorey Saligan, RN, PhD, National Institute of Nursing Research (NINR/NIH), Bethesda, MD
  • Yolanda Vallejo, PhD, Integrative Biology and Infectious Diseases Branch, National Institute of Dental and Craniofacial Research, National Institutes of Health, Bethesda, MD
  • Marcie Zinn, PhD, The Neuro-Cognitive Research Institute (NCRI), Chicago, IL

Neurologic/Cognitive/CNS imaging subgroup[edit | edit source]

Chair (Overall/Cognitive):[edit | edit source]
  • Gudrun Lange, PhD, Mount Sinai School of Medicine, New York, NY
Chair (CNS Imaging):[edit | edit source]
Co-Chairs (Neurologic):[edit | edit source]

Members:

  • James Baraniuk, MD, Georgetown University, Washington, DC
  • Jonas Bergquist, MD, PhD, EMERG (Uppsala University), Uppsala, Sweden
  • Emmeline Edwards, PhD, Division of Extramural Research, National Center for Complementary and Integrative Health (NCCIH), Bethesda, MD
  • Neil Harrison, MB, BS, PhD, MRCP, MRCPsych, EMERG (Sussex University), East Sussex, UK
  • Eliana Mattos Lacerda, MD, PhD, London School of Hygiene, London, UK
  • Jin-Mann Sally Lin, PhD, Centers for Disease Control and Prevention (CDC), Atlanta, GA
  • Denise Lopez-Majano, Patient Advocate
  • Anna-Louise Midsem, European ME Alliance
  • Zaher Nahle, PhD, MPA, Solve ME/CFS Initiative, Los Angeles, CA
  • Benjamin Natelson, MD, Pain and Fatigue Study Center, New York, NY (Ad Hoc)
  • Lubov Nathanson, PhD, Nova Southeastern University, Ft. Lauderdale, FL
  • Matina Nicholson, Patient Advocate
  • Nicole Prestley, The University of British Columbia, Vancouver, BC, Canada
  • Richard Simpson, European ME Alliance
  • Terri Wilder, Patient Advocate
  • Michael Zeineh, MD, PhD, Stanford University, Stanford, CA
  • Marcie Zinn, PhD, The Neuro-Cognitive Research Institute (NCRI), Chicago, IL

Autonomic subgroup[edit | edit source]

Chair:[edit | edit source]
  • Peter Rowe, Johns Hopkins University, Baltimore, MD

Members:

  • Italo Biaggioni, MD, Vanderbilt University, Nashville, TN
  • Mady Hornig, MD, Columbia University, New York, NY
  • Ben Katz, MD, Lurie Children's Hospital, Chicago, IL
  • Denise Lopez-Majano, Patient Advocate
  • Katherine Rowe, MBBS, MD, Royal Childrens Hospital, Melbourne, Australia

Neuroendocrine subgroup[edit | edit source]

Chair:[edit | edit source]

Members:

Immune subgroup[edit | edit source]

Co-Chairs:[edit | edit source]

Members:

QOL/Functional Status/CPET/Activity subgroup[edit | edit source]

Members:

  • Drew Helmer, MD, MS, War Related Illness and Injury Study Center VA- New Jersey Health Care System, East Orange, NJ
  • Nathan Holladay, MD, PhD, Salt Lake City, UT
  • Betsy Keller, PhD, Ithaca College, Ithaca, NY
  • Rachael Korinek, Patient Advocate
  • Christopher Snell, PhD, Workwell Foundation, Stockton, CA
  • Staci Stevens, MA, Workwell Foundation, Stockton, CA
  • Mark VanNess, PhD, University of the Pacific, Stockton, CA

Biomarkers subgroup[edit | edit source]

Chair:[edit | edit source]

Members:

  • Jonas Bergquist, MD, PhD, EMERG (Uppsala University), Uppsala, Sweden
  • Simon Carding, PhD, EMERG (Institute of Food Research/University of East Anglia), Norwich, UK
  • Lily Chu, MD, MSHS, Stanford University, Burlingame, CA
  • Ronald Davis, PhD, Stanford University, Stanford, CA
  • Maureen Hanson, PhD, Cornell University, Ithaca, NY
  • Lubov Nathanson, PhD, Nova Southeastern University, Ft. Lauderdale, FL
  • David Patrick, MD, The University of British Columbia, Vancouver, BC, Canada

NIH/NINDS/CDC[edit | edit source]

Members:

  • Elizabeth Unger, MD, PhD, The Centers for Disease Control and Prevention (CDC), Atlanta, GA
  • Vicky Whittemore, PhD, National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH), Bethesda, Maryland
  • M. Carolina Mendoza-Puccini, MD, Scientific Program Specialist, National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH), Bethesda, Maryland
  • Claudia Moy, PhD, National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH), Bethesda, Maryland
  • Andrew Breeden, PhD, National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH), Bethesda, Maryland

NINDS CDE Team[edit | edit source]

Members:

  • Katelyn Gay, BS, The Emmes Corporation
  • Sherita Ala'i, MS, The Emmes Corporation
  • Joy Esterlitz, MS, The Emmes Corporation
  • Kristen Joseph, MA, The Emmes Corporation
  • Muniza Sheikh, MS, MBA, The Emmes Corporation
  • Sarah Tanveer, BS, The Emmes Corporation

Funding[edit | edit source]

Online presence[edit | edit source]

See also[edit | edit source]

Learn more[edit | edit source]

References[edit | edit source]

  1. National Institute of Neurological Disorders and Stroke. "NINDS Common Data Elements". commondataelements.ninds.nih.gov. Retrieved February 7, 2019.
  2. 2.0 2.1 "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | NINDS Common Data Elements". commondataelements.ninds.nih.gov. Retrieved October 19, 2019.
  3. "Common Data Element (CDE) - Clinfowiki". clinfowiki.org. Retrieved October 19, 2019.
  4. "Glossary". nlm.nih.gov. Retrieved October 19, 2019.