By Kim McCleary
President & CEO of the CFIDS Association of America
One of the world's largest pharmaceutical manufacturers, Sanofi, launched a competition this summer to encourage collaboration and innovation among nonprofit and for-profit organizations to help individuals better engage in their own health. The Collaborate | Activate Innovation Challenge invited proposals from groups who would work together to make a bigger impact than single organizations working alone could expect. The competition attracted 100 proposals from more than 280 organizations by the Aug. 31, 2012 application deadline.
The CFIDS Association of America participated in two Challenge proposals. As announced today by Sanofi's Partners in Patient Health program, both Association-affiliated proposals were selected as finalists by an esteemed panel of judges. The four finalist projects will receive $25,000 to refine their proposals with help from a mentor provided by Sanofi. Mentors will have diverse experience in health, policy, planning and implementation and will help finalist teams strengthen their concepts with implementation plans and metrics.
At an event on Nov. 19, 2012 finalists will pitch their plans. In mid-December, 2012, Sanofi will announce which projects receive the first prize award of $300,000 and runner-up prize money of $100,000. Both winners will receive access to other non-monetary Sanofi resources to implement their plans. Today's announcement made clear the winning projects are expected to be implemented in the real world, not just end with the competition.
The first is a collaboration of the CFIDS Association of America and two nonprofit organizations that also work together through the Chronic Pain Research Alliance: the TMJ Association and the National Vulvodynia Association. The submitted project is titled, “Partnering To End Pain.” Here is a description of that project:
Chronic pain affects 25 percent of Americans and costs the nation up to $635 billion each year in medical treatment and lost productivity. Chronic pain doesn’t discriminate by gender but nearly 50 million American women are solely or disproportionately affected by chronic pain conditions including endometriosis, fibromyalgia, CFS, interstitial cystitis, TMJ and vulvodynia. The reasons chronic pain conditions lack effective evidence-based treatments include patient and condition heterogeneity, lack of standardized assessments and lack of awareness about opportunities to participate in clinical trials.
Through Partnering to End Pain, we will develop a web-based registry for patients with these six chronic pain conditions. This registry will use standardized assessments of domains to characterize patient phenotype (e.g., PhenX toolkit). By creating a comprehensive, standardized database for use by investigators we will impact the pace of chronic pain clinical research and trials. The IOM report “Transforming Clinical Research in the U.S.” notes “a core function of a successful clinical trial is finding patients who fit the predetermined eligibility criteria and getting them to participate” yet “a Harris Interactive Survey of 6,000 cancer patients that found that 85 percent were unaware that participation in clinical trials was even an option. Of the patients surveyed, 75 percent said that if participation in a clinical trial had been offered, they would have been receptive to the idea.”
Partnering to End Pain will be a unique patient registry because it is not disease specific. Rather chronic pain patients experiencing one or more commonly comorbid conditions will come together to be part of clinical research. The use of standardized tools to obtain phenotype information across the chronic pain conditions included in the registry will help identify common and unique biological processes. Partnering to End Pain will be designed to accommodate natural history and prospective patient information.
The second finalist proposal with which the Association is involved is led by Genetic Alliance, a nonprofit organization that serves as the hub of a network of more than 1,200 disease advocacy organizations (DAOs) and provides a biobanking infrastructure for participating organizations through the Genetic Alliance Registry and BioBank. The CFIDS Association's SolveCFS BioBank is part of the Genetic Alliance Registry and BioBank. Genetic Alliance's proposal, “Registries for All Diseases,” builds on its 26-year history of uniting organizations serving different patient communities toward common goals. Their Collaborate | Activate Innovation project is a collaboration with Genetic Alliance, the CFIDS Association of America, the Inflammatory Breast Cancer Research Foundation and the National Psoriasis Foundation. The project will develop a registry using patient-generated information to accelerate development of clinical trials.
The other two finalist projects are:
- 21st Century Brain Trust: Self-administered, clinical-grade cognitive testing app to help detect asymptomatic Alzheimer's Disease. Partners: Geoffrey Beene Gives Back Alzheimer's Initiative, American health Assistance Foundation and USAgainstAlzheimer's Network
- Flu Near You: Patient-centered tool for real-time flu surveillance and promotion of immunization for families and caregivers. Partners: HealthMap, International Society for Infectious Diseases and International Society for Disease Surveillance
We are ecstatic to be among the finalists for this unique opportunity to advance patient-centered research on CFS through Sanofi's Collaborate | Activate Innovation Challenge. The competition so far has already placed CFS in a prominent position before the Challenge judges and Sanofi leadership. The chance to work with Sanofi-appointed mentors to refine our proposals heightens visibility of CFS and our efforts to end it. This opportunity also provides us with new resources for fine-tuning our approach to identify better diagnostics and treatments for CFS.
You're invited to participate in the Nov. 19 finalist event at the Newseum in Washington, D.C., — live or via the live webcast. Details and registration: http://collaborateactivate.com/blog/finalist-event-rescheduled/
Kim McCleary has served as the Association's chief staff executive since 1991.