Anonymous
Not logged in
Talk
Contributions
Create account
Log in
Search
Editing
You + M.E. Registry and Biobank
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!
The '''You + M.E. Registry and Biobank''' (replaces the '''SolveCFS BioBank & Patient Registry''') is a project of the [[Solve ME/CFS Initiative]] established in 2020 as a patient-centered research resource.<ref name=":0">{{Cite web|url=https://youandmeregistry.com/about/ | title = About|website=You + M.E.|language=en-US|access-date=2020-05-24}}</ref> Patient registries and biobanks help overcome a significant obstacle in [[ME/CFS]] research by providing a research-ready community of patients and their clinical information and samples. == Mobile app == A unique feature of this registry is a mobile app.<ref name=":0" /> With the use of a mobile app, participants are asked to consistently report on a core set of symptoms: fatigue, brain fog, unrefreshing sleep, lightheadedness, and post-exertional malaise (PEM)., thus allowing "a moving picture of the disease and how it affects everyday life, as opposed to the single snapshot of the symptoms you might report to your healthcare team during an office visit."<ref name=":1">{{Cite web|url=https://youandmeregistry.com/about/f-a-q/ | title = F.A.Q.|website=You + M.E.|language=en-US|access-date=2020-05-24}}</ref> == Data security == The data is stored in a secure database with anonymized and obvious personal identifiers are removed and is managed by Solve M.E. and our partners.<ref name=":1" /> == Data collection == A collection kit and instructions for the collection, labeling, and shipping of the kits is sent to your address. You can take the kit to a lab (e.g. a Quest Diagnostics facility) close to where you live. Postage-paid return mailers are included. [[Solve ME/CFS Initiative]] can arrange for someone to come to your home to collect the sample, if access to a lab is not possible.<ref name=":1" /> == See also == * [[:Category:Biobanks & patient registries|Biobanks and patient registries]] ==Online presence== *[https://youandmeregistry.com/about/ You + M.E. Registry and Biobank Website] ==References== {{Reflist}} [[Category:Research initiatives]] [[Category:American research initiatives]] {{Reflist}} [[Category:Biobanks & patient registries]]
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