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Partnering with CURE ID to Explore New Treatment Possibilities
CCSF is proud to partner with CURE ID, a free platform developed by the FDA and NIH, to explore drug repurposing—novel uses of existing medications—for CCS and other rare diseases. By collecting real-world patient data, we aim to uncover potential treatments where few options exist.
Together, we’re working to identify promising off-label drug uses for CCS, share insights on treatments that have been tried, and empower the medical community with real-world data on effectiveness. Through this partnership, we aim to accelerate discoveries and improve outcomes for CCS patients worldwide.
On July 28, 2025, CCSF and CURE ID hosted an informational session for those interested in learning more. CCSF's Executive Director and Co-Founder Lennie Woods, Sarcoma Coalition Founding Member and former SARC CEO Denise Reinke, and FDA Health Science Policy Analyst Heather Stone (Leader of the CURE ID Project) discussed the importance of participation from the rare disease community, particularly for conditions like clear cell sarcoma.
FAQs
What is CURE ID?
CURE ID is a free platform developed by FDA and NIH to share novel uses of existing drugs - also known as drug repurposing/off-label use - and explore what others have tried. The goal is to find potential treatments for challenging diseases that lack good treatment options.
Their mission is to use the information collected from users sharing their treatment experiences publicly on CURE ID to help inform what drugs are studied in clinical trials. The findings from these trials will enable the medical community to learn whether a drug is effective or not for its new use.
Who can join CURE ID?
All (domestic & international) CCS patients, caregivers or family members of deceased patients are welcome to join CURE ID.
Is there a fee to join?
CURE ID is a free platform and can be assessed online via their website, or you can download their app from the Apple App Store or Google Play Store.
How is CURE ID different from the xCures project?
The xCures Project is a patient-consented, CCSF-funded research project that focuses on collecting and analyzing electronic medical records (EMRs), specifically related to a CCS patient’s journey.
The CURE ID project primarily captures patient-reported health information, which offers a more comprehensive view by including supplements, vitamins, or medications not typically documented in formal EMRs. Because CURE ID data comes directly from patients or caregivers, it provides faster access to information and highlights treatments as reported by patients themselves. This FDA-funded platform is open-source and available for patients and clinicians to access on demand. In contrast, data gathered through the xCures Project will be analyzed, validated for defining CCS biomarkers, and ultimately published and shared by the Clear Cell Sarcoma Foundation (CCSF).
Both initiatives are important and complementary, and we hope to compare their findings in the future to help validate and strengthen both systems.
Why should I join CURE ID?
CURE ID focuses on patient-reported experiences, including medical treatments and also details that often don’t appear in medical records, such as off-label drug use, supplements, vitamins, lifestyle factors, or emerging therapies. This makes CURE ID a rich and unique resource, especially for rare diseases like CCS.
Participating in CURE ID ensures that the fullest possible picture of your experience, whether effective or not, is captured, empowering both researchers and future patients looking for insights into what may or may not help with clear cell sarcoma.
How do I join CURE ID?
Website:
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Visit https://cure.ncats.io/pilot-overview/sarcoma
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Click on the Share Treatment button
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Type Clear Cell Sarcoma in the search bar and click Continue
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Click Begin the Report button to get started
Mobile app:
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Google Play Store: Search for CURE ID
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Apple App Store: Search for CURE ID
I still have questions. Who can I contact?
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For questions related to CURE ID, contact Heather Stone - Heather.Stone@fda.hhs.gov
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For questions related to xCures or CCSF, contact info@clearcellsarcoma.org
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