2016 NINDS Nonprofit Forum

September 13, 2016 | 9:00 - September 14, 2016 | 3:30

Contact: Jessica Corley
Contact Number: (301) 496-5924
Contact Email: jessica.corley@nih.gov

Porter Neuroscience Building, NIH Main Campus
Bethesda, Maryland
United States

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Progress through Partnership.  NINDS 2016 Nonprofit Forum

The NIH National Institute of Neurological Disorders and Stroke (NINDS) invites members of nonprofit organizations to the Institute's 2016 Nonprofit Forum. The Progress through Partnership Forum provides an opportunity for nonprofit leaders to network with colleagues and to engage in discussions with NINDS staff.

The agenda will feature panel discussions on research strategies, patient access to emerging therapies, clinical outcome measures, patient-centered research and success stories from patient organizations. The meeting will also offer participants a casual setting for a discussion with NINDS program directors.



Tuesday, September 13, 2016
Time Title
9:30-10:00 a.m. Registration
10:00-10:30 a.m. NINDS Director's Welcome
10:30-11:15 a.m. Lessons Learned and Case Studies in Natural History Databases
11:15-11:30 a.m. Break
11:30 a.m.- 12:15 p.m. Data Integration and Data Management (Challenges and Opportunities): Lessons Learned in Data Sharing from Repositories
12:15-1:00 p.m. Strategies for Biomarker Identification
1:00-1:45 p.m. Lunch
1:45-2:30 p.m. NIH 101: Priority Setting, Decision-Making, NIH Basics and Discussion
2:30-3:30 p.m. Developing Better Clinical Outcome Measures: Integrating Patient-Reported Outcomes, Wearable Technologies, and FDA Needs into Clinical Data Collection
3:30-5:00 p.m. Meet the Program Directors
5:00-6:00 p.m. NPO-sponsored Reception


Wednesday, September 14, 2016
Time Title
8:30-10:30 a.m.

Concurrent Breakout Sessions (Select two from the list below.)

  • Strategies for Biomarker Identification
  • Developing Better Clinical Outcome Measures
  • Focus on Ultra-Rare Diseases
10:30-10:45 a.m. Break
10:45-11:30 a.m. Breakout Session Reports
11:30 a.m.-12:30 p.m. Poster Session
12:30-1:30 p.m. Lunch
1:30-2:30 p.m. Cultivating Collaborations on a Shoestring and Investing in the Intellectual Pipeline: Building a Multi-Stakeholder Network from Ground Zero & Best Practices for Finding, Funding and Retaining Researchers
2:30-3:30 p.m. Featured Success Stories: Lessons Learned from Leveraging Resources, Network Building, and Strategic Planning into Successful Business Models