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Vol. LXIV, No. 22
October 26, 2012
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NINDS, Nonprofits Discuss Building Collaborations

nonprofit representatives meet informally with NINDS program directors FDA representatives

In photo at left, nonprofit representatives meet informally with NINDS program directors. At right, three FDA representatives (from l) Dr. Nicholas Kozauer, Andrea Tan and Dr. Michelle McMurray-Heath serve as panelists during lunch discussions.

Photos: Ernie Branson

NINDS recently held its sixth nonprofit forum with a focus on “Building Collaborations for Research.” More than 50 nonprofit groups attended the meeting that provided an opportunity to network with colleagues and participate in discussions with NINDS staff.

Dr. Robert Finkelstein
Dr. Robert Finkelstein, NINDS associate director for extramural research, talks about opportunities for nonprofit groups to work with NIH.

The running theme throughout the meeting was the role that nonprofits play in building collaborations to advance research. The agenda featured plenary talks, breakout sessions, informal chats with NINDS program directors and an independent brainstorming and networking session.

“This is one of the most important meetings we put on throughout the year,” said NINDS director Dr. Story Landis. She provided an overview of NIH that included an update on the new NINDS initiative NeuroNEXT (Network for Excellence in Neuroscience Clinical Trials). She also announced the new trans-NIH clinical trials web site Clinical Trials and You.

Dr. Robert Finkelstein, NINDS associate director for extramural research, set the tone for the day. “If you remember one thing, it’s that we are really here to work with you,” he said, stressing key ways NIH and NINDS can work with nonprofit groups to advance research including identifying new research opportunities, finding common themes across diseases, capitalizing on our strengths and exchanging information.

“We do not want to become isolated and you are the experts from a patient perspective,” he said. “You know what the patients’ needs are. You have the best understanding of the clinical needs of your disorders.”

Next, Dr. James Onken, special assistant to the NIH deputy director for extramural research, led a presentation on how to mine information from the NIH RePORTER—an online tool that provides access to data and analyses of research activities. “The best way to learn about RePORTER is to use it,” he urged.

The meeting then split into two concurrent breakout sessions. In NIH 101, attendees were given basic information about NIH and NINDS including the missions of each, a description of NINDS’s disease portfolio and how the institute supports research, as well as information about NINDS’s advisory council and its importance. NIH 201 highlighted opportunities to develop and advance therapeutics. Brief overviews of such programs as Therapeutics for Rare and Neglected Diseases, Bridging Interventional Development Gaps, Anticonvulsant Screening Program, Countermeasures Against Chemical Threats and the Blueprint Neurotherapeutics Network comprised the session.

“When I think about therapeutic development, projects tend to go awry when the developers have not thought about the patient or who the project is intended for,” said Dr. Rajesh Ranganathan, NINDS associate director for translational research. “Your engagement with the patients is absolutely critical in that respect.”

A plenary session focused on two topics: “Building Resources to Be Ready,” which looked at resources needed to bring new treatments, and “One Voice or Many to Advance a Disease Mission,” which discussed whether groups should stand singly or align with other groups devoted to a particular neurological disorder to move their missions forward.

“I am not advocating that everyone merge into one group…but anything you can do to partner together so we are not wasting our precious resources is good,” said Amy Comstock Rick, chief executive officer of the Parkinson’s Action Network.

The forum’s planning group
The forum’s planning group included (standing, from l) Marian Emr of NINDS; Dean Suhr, president of the MLD Foundation; Paul Gross, chairman of the Hydrocephalus Association; NINDS director Dr. Story Landis; Dr. Petra Kaufmann of NINDS; and Gardiner Lapham, member of the board of directors of the Citizens United for Research in Epilepsy. Seated are (from l) Ronald Bartek, president of the Friedreich’s Ataxia Research Alliance; Dr. Cynthia Rothblum-Oviatt, science coordinator of the Ataxia Telangiectasia Children’s Project; Amy Comstock Rick, chief executive officer of the Parkinson’s Action Network; and NINDS deputy director Dr. Walter Koroshetz.


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