One group wants to change the way clinical trials recruit candidates by giving patients access to their data in the hopes it will build trust spurring them to share more personal information. It is launching a website that will function something like a clinical trial matchmaker, putting patients in touch with trial organizers.
Nonprofit advocacy group Genetic Alliance, which connects patients to researchers, is launching Reg4All, short for Registries for All Diseases. It’s partly funded with a $300,000 grant from Sanofi. Genetic Alliance believes that putting data in the hands of patients will lead to better recruitment numbers. It will work with a company called Private Access that provides platforms to share patient information while keeping it private. Reg4All will use Genetic Alliance’s disease registry and biobank as the foundation for the website. It is gearing up for an April 4 launch.
Sharon Terry, president and CEO of Genetic Alliance, has called for a more patient-centered approach to clinical trials. She told MIT Technology Review that recruiting patients through advertisements can be a challenge and patients who might want to participate in a clinical trial can be put off by the dense, technical descriptions on the likes of ClinicalTrials.gov.
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“The usual way of recruiting people is astoundingly bad,” Terry said. She tackles the frustrating complexities of clinical trials as the mother of two children born with a rare genetic disease. In an interview with Businessweek, Terry talked about her two children who were each diagnosed with pseudoxanthoma elasticum, or PXE—a rare, sometimes debilitating genetic disease that hardens elastic tissues.
Earlier this week, Genetic Alliance launched a repository of information about 13,000 conditions called Disease Info Search. It is intended to connect healthcare providers, researchers and consumers with support groups, relevant and timely peer-reviewed articles, open and appropriate clinical trials, and general disease information, according to a statement fro the organization. Each condition page also includes an interactive tool to help users contribute to biomedical research by securely sharing their health information.
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