The National Institutes of Health (NIH) National Institute of Neurological Disorders and Stroke (NINDS) hosted their annual 2016 Nonprofit Forum on Tuesday, September 13, through Wednesday, September 14, 2016. The Progress through Partnership Forum provided an opportunity for nonprofit leaders to network with colleagues and to engage in discussions with NINDS staff. The forum also promotes the role nonprofits play in linking scientists at NINDS with the patient community for better research outcomes.
The agenda featured panel discussions on natural history databases, biomarker identification, data integration and management, clinical outcome measures, and success stories. Dr. Jenna Koschnitzky, the Hydrocephalus Association Director of Research Programs, served as a panelist for Cultivating Collaborations on a Shoestring and Investing in the Intellectual Pipeline. The panel focused on how to build a network comprised of many different interests as well as finding and funding the researchers. Paul Gross, former HA Board Chairman and interim CEO, moderated a panel that looked at the challenges and opportunities of data integration and management for shared data repositories.
“HA is honored to play a role in the Nonprofit Forum where NINDS staff garners feedback from the patient advocacy community,” shared Dr. Koschnitzky. “We have developed deep and meaningful relationships with the NINDS staff and leadership and continue to be considered a respected voice among the not-for-profit advocacy organizations.”
This year’s agenda featured panel discussions on strategies for biomarker identification used to find targets for interventions that could lead to cures or preventions for conditions, to integrating patient-reported outcomes and wearable technologies to develop better clinical outcome measures for studies with patients.