Anonymous
Not logged in
Talk
Contributions
Create account
Log in
Search
Editing
ME/CFS Common Data Elements Working Group
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history
Namespaces
Page
Discussion
More
More
Page actions
Read
Edit
Edit source
History
Warning:
You are not logged in. Your IP address will be publicly visible if you make any edits. If you
log in
or
create an account
, your edits will be attributed to your username, along with other benefits.
Anti-spam check. Do
not
fill this in!
[[File:NIND CDE.jpg|200px|thumb|right]] 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.<ref name="cde">{{Cite web|url=https://www.commondataelements.ninds.nih.gov/#page=Default | title = NINDS Common Data Elements | last = National Institute of Neurological Disorders and Stroke | first = | authorlink = National Institute of Neurological Disorders and Stroke | date = | website = commondataelements.ninds.nih.gov|archive-url=|archive-date=|url-status=|access-date=2019-02-07}}</ref><ref name=":0">{{Cite web|url=https://www.commondataelements.ninds.nih.gov/Myalgic%20Encephalomyelitis/Chronic%20Fatigue%20Syndrome#pane-138 | title = Myalgic Encephalomyelitis/Chronic Fatigue Syndrome {{!}} NINDS Common Data Elements | website = commondataelements.ninds.nih.gov|access-date=2019-10-19}}</ref> 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.<ref>{{Cite web|url=https://clinfowiki.org/wiki/index.php/Common_Data_Element_(CDE) | title = Common Data Element (CDE) - Clinfowiki|website=clinfowiki.org|access-date=2019-10-19}}</ref> CDEs may be classified as:<ref>{{Cite web|url=https://www.nlm.nih.gov/cde/glossary.html#cdedefinition | title = Glossary | website = nlm.nih.gov|access-date=2019-10-19}}</ref> * 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 == There are 11 subgroups focusing on identifying and defining the common data elements in ME/CFS:<ref name=":0" /> ===Baseline/Covariate subgroup === ====== Co-chairs: ====== * [[Anthony Komaroff]], ''Harvard University, Boston, MA'' * [[Jose Montoya]], ''Stanford University, Stanford, CA'' ====== Members ====== * [[Alison Bested]], MD, ''Nova Southeastern University, Davie, FL'' * [[Fred Friedberg]], PhD, ''Stony Brook Health Sciences, Stony Brook, NY'' * [[Leonard Jason]], PhD, ''DePaul University, Chicago, IL'' * [[Eliana Lacerda | Eliana Mattos Lacerda]], MD, PhD, ''London School of Hygiene, London, UK'' * Denise Lopez-Majano, ''Patient Advocate'' * Anna-Louise Midsem, ''European ME Alliance, Hobro, Denmark'' * [[Zaher Nahle]], PhD, MPA, ''[[Solve ME/CFS Initiative]], Los Angeles, CA'' * [[Lubov Nathanson]], PhD, ''Nova Southeastern University, Ft. Lauderdale, FL'' * Matina Nicholson, ''Patient Advocate'' * [[Elisa Oltra]], PhD, ''Universidad Católica de Valencia San Vicente Mártir, Valencia, Spain'' * Nicole Prestley, ''The University of British Columbia, Vancouver, BC, Canada'' * [[Richard Simpson]], ''[[European ME Alliance]]'' * [[Michael Zeineh]], MD, PhD, ''Stanford University, Stanford, CA'' === Fatigue subgroup === ====== Chair: ====== * David Cella, PhD, ''Northwestern University, Evanston, IL'' ====== Members: ====== * [[Mary Dimmock]], ''Patient Advocate'' * [[Fred Friedberg]], PhD, ''Stony Brook Health Sciences, Stony Brook, NY'' * [[Jin-Mann Sally Lin]], PhD, ''Centers for Disease Control and Prevention (CDC), Atlanta, GA'' * [[Luis Nacul]], MD, PhD, ''London School of Hygiene, London, UK'' * [[Leorey Saligan]], RN, PhD, ''National Institute of Nursing Research (NINR/NIH), Bethesda, MD'' === Post-exertional malaise subgroup === ====== Co-chairs: ====== * [[Lily Chu]], MD, MSHS, ''Stanford University, Burlingame, CA'' * [[Mary Dimmock]], ''Patient Advocate'' '''Members:''' * [[David Cella]], PhD, ''Northwestern University, Evanston, IL'' * [[Dane Cook|Dane B. Cook]], PhD, ''University of Wisconsin, Madison, WI'' * [[Betsy Keller]], PhD, ''Ithaca College, Ithaca, NY'' * Anna-Louise Midsem, ''[[European ME Alliance]]'' * [[David Patrick]], MD, ''The University of British Columbia, Vancouver, BC, Canada'' * [[Richard Simpson]], ''[[European ME Alliance]]'' === Sleep subgroup === '''Members:''' * [[Lily Chu]], MD, MSHS, ''Stanford University, Burlingame, CA'' * [[Susan Levine]], MD, ''New York, NY'' * [[Katherine Rowe]], MBBS, MD, ''Royal Childrens Hospital, Melbourne, Australia'' * [[Kimberly Sullivan]], PhD, ''Boston University, Boston, MA'' === Pain subgroup === '''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 === ====== '''Chair (Overall/Cognitive):''' ====== * [[Gudrun Lange]], PhD, ''Mount Sinai School of Medicine, New York, NY'' ====== '''Chair (CNS Imaging):''' ====== * [[Jarred Younger]], PhD, ''The University of Alabama, Birmingham, AL'' ====== '''Co-Chairs (Neurologic):''' ====== * [[Jose Montoya]], MD'', Stanford University, Stanford, CA'' * [[Kimberly Sullivan]], PhD, ''Boston University, Boston, MA'' '''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 Lacerda | 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 === ====== Chair: ====== * [[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 === ====== Chair: ====== * [[Nathan Holladay]], ''Salt Lake City, UT'' '''Members:''' * [[Mary Dimmock]], ''Patient Advocate'' * [[Christopher Mullins]], PhD, ''National Institute of Diabetes and Digestive and Kidney Diseases (NIH/NIDDK), Bethesda, MD'' === Immune subgroup === ====== Co-Chairs: ====== * [[Mady Hornig]], ''Columbia University, New York, NY'' * [[Nancy Klimas]], ''Nova Southeastern University, Ft. Lauderdale, FL'' '''Members:''' * [[Simon Carding]], PhD, ''EMERG (Institute of Food Research/University of East Anglia), Norwich, UK'' * [[Mary Dimmock]], ''Patient Advocate'' * [[Mary Ann Fletcher]], PhD, ''Nova Southeastern University, Ft. Lauderdale, FL'' * [[Nathan Holladay]], MD, PhD. ''Salt Lake City, UT'' * [[Andreas Kogelnik]], MD, PhD, ''Open Medicine Institute, Mountain View, CA'' === QOL/Functional Status/CPET/Activity subgroup === '''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 === ====== Chair: ====== * [[Elisa Oltra]] '''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 === '''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 === '''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== ==Online presence== *Twitter *Facebook *[https://www.commondataelements.ninds.nih.gov/Myalgic%20Encephalomyelitis/Chronic%20Fatigue%20Syndrome Website] *YouTube ==See also== * [[National Institute of Neurological Disorders and Stroke]] ==Learn more== ==References== {{Reflist}} [[Category:Research initiatives]] [[Category:American research initiatives]]
Summary:
Please make sure your edits are consistent with
MEpedia's guidelines
.
By saving changes, you agree to the
Terms of use
, and you irrevocably agree to release your contribution under the
CC BY-SA 3.0 License
and the
GFDL
. You agree that a hyperlink or URL is sufficient attribution under the Creative Commons license.
Cancel
Editing help
(opens in new window)
Templates used on this page:
Template:Cite web
(
edit
)
Template:Main other
(
edit
)
Template:Reflist
(
edit
)
Module:Check for unknown parameters
(
edit
)
Module:Citation/CS1
(
edit
)
Module:Citation/CS1/COinS
(
edit
)
Module:Citation/CS1/Configuration
(
edit
)
Module:Citation/CS1/Date validation
(
edit
)
Module:Citation/CS1/Identifiers
(
edit
)
Module:Citation/CS1/Utilities
(
edit
)
Module:Citation/CS1/Whitelist
(
edit
)
Module:No globals
(
edit
)
Navigation
Navigation
Skip to content
Main page
Browse
Become an editor
Random page
Popular pages
Abbreviations
Glossary
About MEpedia
Links for editors
Contents
Guidelines
Recent changes
Pages in need
Search
Help
Wiki tools
Wiki tools
Special pages
Page tools
Page tools
User page tools
More
What links here
Related changes
Page information
Page logs