2016 NINDS Nonprofit Forum

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

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

The meeting was held at:

Porter Neuroscience Building, NIH Main Campus
Bethesda, Maryland

 

Agenda

NINDS 2016 Nonprofit Forum (Day 1)

Day 1: Tuesday, September 13, 2016
TimeTitle
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


NINDS 2016 Nonprofit Forum (Day 2)

Day 2: Wednesday, September 14, 2016
TimeTitle
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
Related Topics and Tools
The NCATS Toolkit
A resource to provide patient groups with tools to advance medical research.
RaDaR - Rare Diseases Registry Program.
 
NIH 101
A videocast of the NINDS Nonprofit Forum, including an orientation session for new attendees (first session).
 
Grants Process Overview
NIH central resource for grants and funding information.
 
Stories about Science: Narratives for Nonprofits
Webinar on the importance of narrative in the nonprofit and research space.
 

Contact

Contact NINDS_nonprofit_forum@nih.gov with questions and discussion ideas.