More than ever, the world needs open and easy access to the data that will give all of us options for treatments for serious diseases. We need an easy-to-use platform to collect health data and biological samples. To solve for this need, we’ve created Registries for All Diseases, understanding that people need a trusted environment to feel secure in the fact that their information is protected and is only used to spur innovations in disease treatments.
Registries for All Diseases is the result of collaboration between more than a thousand disease advocacy organizations (sometimes called support groups). Genetic Alliance, CFIDS Association of America, National Psoriasis Foundation and the Inflammatory Breast Cancer Research Foundation, have come together in representation of those organizations, to create a platform for individuals to store and share their medical data and biological samples.
Basic and translational research is accelerating rapidly, however essential elements like data and samples from individuals are not easily accessible by scientists and others trying to discover therapies to alleviate suffering. The Director of the National Institutes of Health has called for a patient-centered research network , and clinical data and samples are a critical part of such a network. Once there are easy and safe ways to offer their information to these scientific endeavors, every man, woman and child will be empowered to engage in their health, and the health of future generations, in a meaningful way .
In a nutshell, our team seeks to create a cross-disease, systems biology-based, crowdsourced, long tail, aggregated resource critical to advancing translational research on more than 1,000 diseases. In 2003, as a prototype to Registries for All Diseases, Genetic Alliance and several partner organizations developed the Genetic Alliance Registry and BioBank (GARB). GARB’s common infrastructure contains over 30,000 samples and clinical records on over 10,000 individuals affected by a dozen diseases. GARB’s success in recruiting participants and attracting disease researchers, lays a strong foundation for the creation of a more ambitious registry. Genetic Alliance has a great deal of experience increasing the capacity of disease advocacy organizations, and Registries for All Diseases will create a practical, flexible, tool to accelerate the quest for treatments.
We are focused on empowering people both individually and through disease advocacy organizations, because they are uniquely positioned to recruit and retain individuals into registries and biobanks . More than any other entity in the biomedical research system, they understand their members and the diseases that affect them. They know what these individuals need to stay engaged, share information longitudinally and participate in clinical trials. As an honest broker, these organizations offer an excellent stewardship governance model that allows meaningful citizen engagement in science. Disease advocacy organizations are committed to what matters most to their members.
Registries for All Diseases rests on the principle that individuals are interested in becoming active in improving their health. It will have three levels of engagement.
- A gamified survey to engage people in a gentle and easy way in entering clinical information, entering through Disease InfoSearch (diseaseinfosearch.org).
- A virtual research network, asking individuals to respond to a couple of hundred clinical questions to characterize them for potential research.
- A detailed questionnaire created by a disease advocacy organization, and the opportunity to bank biological samples.
What’s special about this project? It empowers individuals to participate in their health, and gives disease advocacy organizations a valuable tool in the quest for therapies. It focuses on what matters most to individuals living with diseases – finding a solution to their health questions; the clinical questions posed by disease advocacy organizations and their members will dominate the activity in the Registries for All Diseases. It empowers individuals to reclaim their health in the form of contributing data and samples.
Registries for All Diseases accelerates translational research by linking clinical information and samples in a dynamic registry that allows recontact in a trusted environment. Because Registries for All Diseases breaks down the silos between diseases, it allows for advanced research into comorbidities stretching across seemingly unrelated diseases. Finally and most importantly, sharing data broadly will transform the competitive paradigm. This will provide an opportunity for any interested party to apply his or her skills to the problems at hand – think about a math and engineering high school student, or retired database analyst – sunshine on the data will cause an explosion in new discoveries.
1. Collins, F.S. (2012). A Vision for a National Patient-Centered Research Network. In National Workshop to Advance the Use of Electronic Data in Patient-Centered Outcomes Research. (Palo Alto, CA)
2. Terry, S.F., and Terry, P.F. (2011). Power to the people: participant ownership of clinical trial data. Sci Transl Med 3, 69cm63.
3. Terry, S.F., Terry, P.F., Rauen, K.A., Uitto, J., and Bercovitch, L.G. (2007). Advocacy groups as research organizations: the PXE International example. Nat Rev Genet 8, 157-164.
About the Author: Sharon Terry is the President and CEO of Genetic Alliance.