PSC Partners Seeking a Cure
Policy and Agreement Documents for Collaborative Research Projects
Transparent & fair stewardship of patient data & biosamples in collaborative research projects.
Posted February 24, 2025
Background & Context
PSC Partners is a rare disease advocacy org, and is investing in the collection of data and biosamples to drive research towards safe and effective treatments for PSC, a rare and devastating autoimmune liver disease. Our desire is to use these assets as openly and as often as possible, while at the same time preserving our ownership and rights in a clear and transparent manner.
Immediate Problem
Drafting of adequate internal policies to guide the adoption of collaborative research projects.
Drafting of template agreements for collaborative research projects.
Work & Deliverables
Seeking to draft and adopt policies and agreements for transparent stewardship of patient-org-funded data and biosamples, acknowledgement and publication policies for collaborative research projects with academic investigator and/or other patient advocacy organizations.
Preparation Phase
- Intro call with PSC Partners research team member
- Sign volunteer agreement and confidentiality agreement and return to PSC Partners
Collaboration Phase
- Review draft contracts and send markup to volunteer coordinator
- Schedule call to discuss questions
Wrap Up
- Send final contract to volunteer coordinator
PSC Partners Seeking a Cure
The mission of PSC Partners Seeking a Cure is to drive research to identify treatments and a cure for primary sclerosing cholangitis (PSC) while providing education and support for those impacted by this rare disease. Founded in 2005, PSC Partners Seeking a Cure is a 501(c)(3) nonprofit organization. The various programs give support and educate patients (patients=patients, caregivers, and families) and the medical community about primary sclerosing cholangitis (PSC), a rare biliary liver disease, and encourage ground-breaking research in the search for treatments and a cure. We hold annual conferences throughout the United States, in partnership with medical centers that treat PSC patients and conduct PSC research. The Mentorship Program pairs newly diagnosed patients with patients of similar backgrounds, disease experience, gender, or age. Support groups meet on Zoom, and a community of 5,000 PSC patients share their PSC experience on the PSC Partners Facebook group page and in Instagram. The PSC Partners website is a rich resource for the community. www.pscpartners.org. Monthly newsletters, blogs, podcasts, and webinars educate and bring the patient and medical community together. The Canadian affiliate, PSC Partners Canada, works seamlessly with PSC Partners on our large initiatives. A grant program has been building up since 2009 and through community donations has awarded around $6M in competitive seed grants. As part of the CZI Rare As One cohort, our team has grown, as has our vision. We lead our own research to remove research obstacles. The PSC Partners Patient Registry was launched in 2014 in collaboration with the NIH Office of Rare Disease Research. We have launched an International Collaborative Research Network which is based on the research agenda that was designed from input from the patient community and KOLs. The ICRNetwork will be meeting again back-to-back with the patient conference, so that engaged researchers can interact with patients. The ICRNetwork will be meeting again back-to-back with the patient conference, so that engaged researchers can interact with patients. WIND-PSC is another result of the CZI grant that made us dare to think big.
PSC Partners Seeking a Cure
The mission of PSC Partners Seeking a Cure is to drive research to identify treatments and a cure for primary sclerosing cholangitis (PSC) while providing education and support for those impacted by this rare disease. Founded in 2005, PSC Partners Seeking a Cure is a 501(c)(3) nonprofit organization. The various programs give support and educate patients (patients=patients, caregivers, and families) and the medical community about primary sclerosing cholangitis (PSC), a rare biliary liver disease, and encourage ground-breaking research in the search for treatments and a cure. We hold annual conferences throughout the United States, in partnership with medical centers that treat PSC patients and conduct PSC research. The Mentorship Program pairs newly diagnosed patients with patients of similar backgrounds, disease experience, gender, or age. Support groups meet on Zoom, and a community of 5,000 PSC patients share their PSC experience on the PSC Partners Facebook group page and in Instagram. The PSC Partners website is a rich resource for the community. www.pscpartners.org. Monthly newsletters, blogs, podcasts, and webinars educate and bring the patient and medical community together. The Canadian affiliate, PSC Partners Canada, works seamlessly with PSC Partners on our large initiatives. A grant program has been building up since 2009 and through community donations has awarded around $6M in competitive seed grants. As part of the CZI Rare As One cohort, our team has grown, as has our vision. We lead our own research to remove research obstacles. The PSC Partners Patient Registry was launched in 2014 in collaboration with the NIH Office of Rare Disease Research. We have launched an International Collaborative Research Network which is based on the research agenda that was designed from input from the patient community and KOLs. The ICRNetwork will be meeting again back-to-back with the patient conference, so that engaged researchers can interact with patients. The ICRNetwork will be meeting again back-to-back with the patient conference, so that engaged researchers can interact with patients. WIND-PSC is another result of the CZI grant that made us dare to think big.