For the data to be of greatest value to the community, many reports are necessary. This may help identify subgroups of responders and non-responders based on different underlying disease mechanisms affecting different patients. Thank you to our ongoing collaborators for their expertise and guidance!
CURE ID outreach graphic calling on patients, care partners, and healthcare providers to share their treatment experiences. The background image is of the Covid virus in blue. The website url, a QR code and the icons of the study partners are provided.
This #LongCOVID awareness day and #LongCovidAwarenessMonth we ask you to continue to share your treatment experiences on FDA and The National Institutes of Health National Center for Advancing Translational Sciences (NCATS) #CUREID (lnkd.in/ejcqD3EA)!
@cureid.bsky.social featured on latest Freakonomics Radio podcast. H/t @idepiheather.bsky.social
Are thousands of medical cures hiding in plain sight?
#LongCOVID
freakonomics.com/podcast/are-...
Thanks so much for sharing and providing these extra details about the ability for care partners to submit experiences! Also note that it’s a global registry so it’s open to patients and clinicians anywhere in the world. And you can follow cases as they get approved at cure.ncats.io/explore/case...
Image encouraging patients, care partners, and healthcare providers to share their Long COVID treatment experiences on CURE ID, including both what has helped and what hasn’t. The goal is for this data to inform the drugs selected for clinical trials.
Join the webinar and share your treatment experience on CURE ID today by going to: cure.ncats.io/pilot-overvi...
Cases that are submitted by Jan. 31st will be included in the first interim analysis!
Featuring talks by:
Lauren Stiles, Dysautonomia International
Emily Taylor, Solve ME
Liza Fisher, Long COVID Alliance
Heather Stone, CURE ID - FDA
Dr. Keyla Tumas, CURE ID - NCATS/NIH
Come get your questions about the program answered!
Please share with others in the dysautonomia, ME and LC communities! The more patients enroll, the more we can learn about which trmts are helping people with specific symptoms, and treatments that aren't helping. This data will be used to help inform federal agencies on research priorities for RCTs
Register for the Zoom webinar at:
bit.ly/CureIDwebinar
Date: January 23, 2025
Time: 7-8pm Eastern
If you can't tune in during the live broadcast, you can register for the webinar to receive an email copy of it after the live broadcast.
We'll get a sneak peek at some of the research results available so far and we'll hear from some of the advocacy orgs involved in designing the study on what they hope to get out of the study for their patient community.
Join us for a free webinar being hosted by Dysautonomia International on Thursday, Jan. 23rd at 7pm ET. Questions such as: What is the CURE ID study? How can I get involved? And What are the results so far? Will be discussed.
Did your existing health issues get worse after a COVID infection, or did you develop Long COVID? Tune in to our free webinar on January 23rd to learn how you can get involved in a study DI is working on with the FDA and other pt orgs to identify what treatments are helping or not helping people.
Please continue to help us spread the word about CURE ID so it can be an effective resource for patients, caregivers/partners and clinicians alike!
Improvement is a continuous process and we know there is more work to be done. However, we hope we have been able to incorporate insights from a number of users to bring our visitors an improved experience and to have CURE ID bring value to the patient and medical community! /5
Those interested in reporting their treatment experiences for #LongCovid, #Sarcoma, #RASopathies, and #InfectiousDiseases, or who wish to update their previously entered cases, are continued to be encouraged to do so. The more experiences shared, the more valuable the data. /4
You can now share treatments with off-label drugs for any disease on CURE ID using the Other Diseases form or our new generic cancer & genetic disease forms. A generic form for Infection-Associated Conditions besides Long COVID is in development (e.g., ME, Dysautonomia, etc.) /3
We have striven to make the site easier to navigate and to provide users more info about the value the data in CURE ID has to help find treatments. See why it is so important for patients, caregivers/partners, and healthcare providers to share their treatment experiences. /2
New homepage of CURE ID mobile app describes what the platform is and the share and explore features
Excited to share that a new version of the CURE ID platform (4.5.3) has been released on web and mobile! As we celebrate the start of 2025, come check out the new features and enhanced look and feel of the treatment registry. Go to cure.ncats.io or download “CURE ID” /1
Please help us celebrate CURE ID turning 5! Today marks the 5th anniversary of our global launch of the drug repurposing treatment registry. We could not have done any of it without the patients, caregivers, and clinicians who have contributed their experiences.