Partnering with Government to Shape Disease Research

Paul Gross leading a panel on Patient Registries, co-organized with Dr. Joe V. Selby, Executive Director of the Patient Centered Outcomes Research Institute (PCORI).

Earlier this week, on September 8 and 9, 2015, the National Institutes of Health (NIH) National Institute of Neurological Disorders and Stroke (NINDS) hosted their annual Nonprofit Forum. This annual forum, Progress through Partnership, promotes the role nonprofits play in linking scientists at NINDS with the patient community for better research outcomes. It also provides an opportunity for nonprofit leaders to network with colleagues and to engage in discussions with NINDS staff.

“Over the last five years, the Hydrocephalus Association has developed deep and meaningful relationships with the NINDS staff and leadership, “ said Paul Gross, acting CEO at the Hydrocephalus Association.  “NINDS is the largest funder of brain science in the country and these relationships provide HA with an the opportunity to play a significant role in in Nonprofit Forum where NINDS staff garners feedback from the patient advocacy community.”

Gross just completed a four-year term as an advisor on the NINDS Council. “Even though I am no longer on NINDS Council, HA continues to be considered a respected voice among the not-for-profit advocacy organizations, connecting senior leadership in NINDS to important issues for our patient communities.”

This year’s agenda featured a plenary talk and panel on patient registries which was co-moderated by Paul and included Dr. Joe Selby, Executive Director of the Patient Centered Outcomes Research Institute (PCORI). The panel, entitled Lessons Learned and Case Studies in Patient Registries, focused on challenges and opportunities of different types of registries, including the technology they use and the patient consent process. Paul shared lessons learned from the Hydrocephalus Clinical Research Network (HCRN) registry.

In addition to the panel on patient registries, this year’s event featured sessions on strategies for stimulating basic research at NINDS, working with government and industry on translational research, and partnering effectively with industry in clinical trials.