Partnering for Cures—Disruptors' Academy: Building Smarter Registries

November 03, 2015

The moderator, Katherine Maynard of PWR, opened the session by explaining that registries allow patients to engage actively and become partners in research. But registries need care and feeding to make sure the data stay relevant and can be used for research. She also cautioned that registries bring up many issues to be considered, such as diversity, standardization, governance, and privacy.

Kyle Brown of PatientCrossroads noted that the conversation about registries has changed quickly in the last several years. He used to have to start presentations by explaining what a patient registry is.

Brown’s passion is “knocking down silos to make the data more useful for everybody,” he said. His company partners with many groups, from academics to “two moms sitting around the kitchen table.” One of those moms, Megan O'Boyle of the Phelan-McDermid Syndrome International Registry, has been working with Brown for six years. O'Boyle was persuaded by another parent to go to a meeting about patient registries at the National Institutes of Health because she happened to live closest. That one meeting turned into a six-year passion. Of the 1,300 diagnosed cases of Phelan-McDermid Syndrome in the world, 844 are in the registry, and one-third have uploaded records. The registry was recently awarded a Patient-Powered Research Network grant from the Patient-Centered Outcomes Research Institute (PCORI), “which has catapulted us into the world of big data,” said O'Boyle.

Another registry that has received PCORI funding is Citizen Pscientist, which is run by the National Psoriasis Foundation. Leah McCormick Howard explained that users can contribute data, run queries, and analyze and discuss findings.

Jaye Bea Smalley of PCORI, whose organization was established through the Affordable Care Act, aims to produce high-integrity information and answer questions that are important to patients and caregivers. PCORnet, the National Patient-Centered Clinical Research Network, works to increase the speed at which information is produced. “Engagement is key,” said Smalley. “Collaboration is a major part of this network.”

These collaborations are opening doors to new ways of collecting and using data.

O'Boyle pointed out that 97 percent of the families in her registry are interested in participating in clinical trials. Through the registry, her foundation can directly contact those families who have identified particular symptoms, such as seizures. And the families feel that getting their aggregated data back is a great reward.

Howard agreed that people are more willing than ever to share data. She has noticed that, in their online platforms, her disease community encourages people to use the registry. “Our registry lets our community play a role in research that matters to them,” she said. In addition to connecting users, Smalley said, registries can add value by distributing data in an understandable language. ‘It’s about creating value for people.“

According to O'Boyle, six years ago clinicians thought patients weren’t qualified to answer their own questions. Now they recognize that patient-reported data are legitimate. "There is so much missing from an electronic health record,” echoed Brown. “You have to have patient input.”

“Having complete data is key,” agreed Smalley. If you are creating data that will be used by researchers and clinicians, for example, those groups need to be involved in the registry.

Brown added that more data are not better, especially if it’s fragmented. “More data in one place that people can access is better,” he said. For example, there are 27 pharma companies doing research for muscular dystrophy, and it doesn’t make sense for all of them to have their own registries.

Another important function of registries is to share the data widely. O'Boyle likened the growth of her group’s registry to raising children to become independent adults: “Our group has collected it, now it’s time to let it go.”


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