SARConnect – FSR’s Initiative to Accelerate Advancements in the Sarcoid World
As a 501(c)3 nonprofit organization, our strengths lie in our ability to connect stakeholders to advance research. Partner with us to improve:
- Trial Recruitment – FSR has the unique ability to support patient recruitment through multiple mechanisms of outreach, including our longitudinal IRB-approved patient registry, our robust online community, and our diverse patient programs.
- Patient Outreach – our patient network spans globally allowing for effective and significant patient outreach, including market research.
- Investigator and Clinician Outreach – We support the development and testing of industry’s and academia’s technological advancements to help physicians and investigators in diagnostics and treatments.
This program serves to bridge the gap between industry, clinicians, investigators, and patients in the world of sarcoidosis and accelerate research in treatments, diagnostics, medical technology, and investigative studies.
It comes with no surprise that the sarcoidosis space consists of a small network with a large level of discontinuity. Clinical trials come to a premature end due to the inadequate recruitment of patients, ultimately preventing sarcoid drugs from reaching the market and the masses. It is estimated that 85% of clinical trials in the United States fall short in recruitment, forcing a termination of the study. Yet, 92% of sarcoidosis patients represented in the FSR Patient Registry have expressed their interest in being contacted for clinical studies. Through FSR’s very own growing global registry of sarcoidosis patients, the launch of SARConnect works to stimulate and cause a surge in drug development by being the liaison for study subjects and investigators.
We recognize that ensuring adequate recruitment for trials, particularly in academia, can be difficult. Our team is committed to ensuring that clinical trials are adequately resourced and patient-centered, helping with the process of providing informed consent and following up to ensure patients follow through.
Beyond including clinical trials or other opportunities for which you are recruiting patients in our blog, we can also conduct direct, targeted outreach to our community based on your needs.
By bridging the gap between these investigators and patients, we hope to ensure that researchers are successful in seeing the trials to completion and advancing the entire field of sarcoidosis so that we may see continued funding, interested investigators, and improved understanding for this disease and improved treatment options.
These efforts and more describe a program designed to bridge the gaps between patients and investigators, SARConnect.
- 50,000 patients via Online Support Community allowing generalized and direct emails
- 3,100+ patients within Patient Registry allowing for field-specific queries
- Personalized relationships with 2,000+ patients allowing for direct outreach
- Resources to help address barriers to trial engagement
- 73 patients trained to do grassroots education and outreach efforts to activate patients and other stakeholders in their local communities to:
SARConnect will also support the development of technological advancements to assist in the field of diagnostics and treatments by using FSR’s network to connect the nation’s top investigators, clinicians, and centers of excellence in the field of sarcoidosis. SARConnect can help to support any medical technology or re-purposed drug treatments, in addition to new drug developments, to reshape the future of sarcoidosis.
Please complete the form below to learn more and connect with our team: