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Vol. LXV, No. 23
November 8, 2013

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NINDS Forum Focuses on Progress via Partnership

Dr. Nancy Wexler of the Hereditary Disease Foundation greets NINDS deputy director Dr. Walter Koroshetz Organizers gather Dr. Petra Kaufmann discusses a new effort to engage patients in clinical research

Forum highlights include (above, from l): Dr. Nancy Wexler of the Hereditary Disease Foundation greets NINDS deputy director Dr. Walter Koroshetz; organizers gather; and NINDS’s Dr. Petra Kaufmann discusses a new effort to engage patients in clinical research.

Representatives from nearly 60 organizations across the country recently joined NINDS at its seventh nonprofit forum: “Progress Through Partnership.” The 2-day meeting gave patient advocacy groups an opportunity to learn about NIH and NINDS, network with each other and interact directly with program staff.

“When I became institute director I thought it would be a great idea once a year to bring all of our voluntary organizations together with NINDS staff to tell you what we are doing and to learn about what you are doing, and for each of you to learn from each other,” said NINDS director Dr. Story Landis, in opening remarks.

She reviewed a number of the institute’s recent successes: Completion of phase II of the John Edward Porter Neuroscience Research Center, the NeuroNEXT program—a clinical research network designed to accelerate therapy development—and the recent conclusion of two clinical trials that may have implications for clinical practice. Landis also mentioned the launch of a new Stroke Trials Network—a national clinical trials network created to encourage enduring collaborations, expedite recruitment and data sharing and advance treatments, prevention and recovery.

For the first time, the forum was webcast. Also new was the meeting’s timing; it was held directly before the National Advisory Neurological Disorders and Stroke Council convened. This enabled many to also attend the open session of the council meeting.

Dr. Petra Kaufmann, NINDS associate director for clinical research, spoke on a new effort to engage patients in clinical research. “There is a crisis in clinical research,” she said. “The crisis is that researchers are having trouble finding patients for clinical trials.”

Nonprofit representatives informally meet with NINDS program directors.

Nonprofit representatives informally meet with NINDS program directors.

Photos: Bill Branson

Kaufmann suggested NINDS and investigators establish active partnerships with patients and patient groups by collecting names of volunteers willing to work with NINDS on design and review of clinical trials. She said very few trials involve patients in the planning and oversight aspects. However, this needs to change. “We—NINDS, patients and investigators—are all in one boat,” she said. “If we don’t coordinate we will not get anywhere. We need active partnerships.”

Dr. Kathy Hudson, NIH deputy director for science, outreach and policy, gave a presentation on the BRAIN Initiative, which President Obama announced earlier this year to revolutionize our understanding of the human brain.

“The science—in large part because of the investments of NIH and, certainly, NINDS—has brought us to a place where we are in a unique moment in the history of science and technology to apply what we have learned to develop new tools and technologies to understanding brain structure and function,” said Hudson.

Nonprofit representatives were then given a chance to meet informally with NINDS program directors before heading into the last session of the day—a panel discussion highlighting success stories and experiences of four groups: The Association for Frontotemporal Degeneration, Dystonia Medical Research Foundation, Citizens United for Research in Epilepsy and Parkinson’s Action Network.

Day 2 began with “What Does the NINDS Advisory Council Do? Perspectives from Council Members.” Its purpose was to provide a basic understanding of how council works and prepare nonprofit representatives for the council meeting the next day.

“One of the privileges of being on council is that you get to see the bigger picture,” said Dr. Kevin McNaught of the Tourette Syndrome Association. “That privilege comes with responsibility. We have to put aside our own projects and look at the bigger picture—the greater good—neuroscience as a whole.”

“It is critical for nonprofit groups to have outstanding scientists and clinicians on their boards,” said Landis, summing up themes throughout the 2 days. “Network to find the right advisors. If you have the right people, doors open and extraordinary opportunities arise. Partnerships are critical.”

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