Biomedical research is hamstrung by a lack of collaboration and data-sharing and research participants and their families must become “citizen scientists” to revolutionize the system, said Sharon Terry, president and CEO of the Genetic Alliance in a newly-released TEDMED talk that sheds new light on the organizations developing new treatments for disease. The Genetic Alliance is a strategic partner of UNC Catalyst.
In Terry’s talk, she tells the story of discovering in 1994 that her two children were both affected by pseudoxanthoma elasticum, a rare genetic disorder that causes the symptoms of premature aging. After being contacted by different research institutions, she and her husband quickly learned, that there was no systematic effort to understand PXE.
“Researchers competed with each other because the ecosystem is designed to reward competition rather than alleviate suffering,” Terry said.
The TEDMED talk details how she and her husband, Patrick, educated themselves on the disease and gathered thousands of similarly affected people around the world to initiate studies and clinical trials.
“Citizen scientists, activists using do-it-yourself science and crowdsourcing, are all changing the game,” Terry said.
Her TEDMED talk can be viewed here.
Francis Collins, M.D., Ph.D., director of the National Institutes of Health, said, “The Terrys have been pioneers in bringing patients and their loved ones to the front lines of medical research, becoming active participants in the search for cures. All of us involved in the pursuit of health progress should take Sharon Terry’s talk to heart and continually re-evaluate the true meaning of patient engagement and patient-centric research.”
In a statement, Patrick Terry said, “We’re really heartened that these issues, which affect millions of Americans touched by serious illnesses, are being shared and discussed. Research into lifesaving treatments is too important to be impeded by antiquated ideas and approaches between by physicians, scientists and institutions that refuse to share vital information. Additionally, research participants and their families should be central, and recognized as critical partners in sharing their perspectives and ideas that can advance the solution process. We hope that Sharon’s TEDMED talk captures attention and influences current thinking.”
The Genetic Alliance is a strategic partner of UNC Catalyst, an endeavor of the UNC Eshelman School of Pharmacy launched with a $2 million grant from the Eshelman Institute for Innovation. UNC Catalyst will create and freely give patient groups and rare-disease organizations with the knowledge and research tools to train scientists to create new treatments. Terry is a member of the UNC Catalyst Governance Board.