NINDS Nonprofit Summit Recap-Renee Wuchich

NINDS Nonprofit Summit Recap-Renee Wuchich

8th annual NINDS Non Profit Conference
NIH, Bethesda MD
September 23 and 24

Our Co-Founder Renee Wuchich and Volunteer Tara Griffin attended the NINDS Nonproft conference last month. The opening address was given by Dr Story Landis, Executive Director of NINDS. She discussed the importance of the patient advocate groups working together and sharing ideas.   Hence the title of the conference “Progress through Partnership.” Dr Landis was excited to see the response this year, there were 65 participants from 43 patient advocate groups. Dr Landis shared that she has enjoyed her role at NINDS and working with the patient groups but she is retiring. The current Deputy Director, Walter Korshetz will be the Interim Director until someone is hired.

The underlying  theme of the conference was how to prepare your organization for clinical trials. There are requirements and processes that need to be in place for an organization to be prepared to move toward clinical trials or as others have learned the hard way you may have an effective drug, start a trial, but then have the trial cancelled because of failure to be in compliance with these requirements. Some important steps include establishing a patient registry, building a natural history, convening a clinical network and having translational tools (bio repository, animal models, and cell models).

There were several panel discussions led by patient advocate groups, researchers and NINDS employees. One of the discussions was how to engage the pharmaceutical industry. It used to be that the patient groups had to work very hard to get the attention of the pharmaceutical industry. But, the tide is turning and now the focus is on patient centered outcomes. The message is for biotech to get involved early with venture capital and academia to take drugs from testing to the market. Now the pharmaceutical companies are more driven to collaborate with patient groups and build a partnership with the same goals. One key point in the discussion is for all patient groups to focus on the end result and who the players are that will be needed to achieve that result. All of these players should be brought to the table early for discussions and to build relationships. These meetings should include pharma, researchers, FDA, CTSA and NINDS program directors. The patient group should take on the role of convener and bring everyone to the table, as well as, keep everyone informed of progress. It is estimated that to develop a new drug takes 10 years and costs $1 Billion dollars. It is critical to have everyone on the same page and know how it will be funded.

There was a presentation on how patients can work with the Clinical and Translational Science Awards (CTSA). CTSA is the largest single funding source at the NIH and has many program sites across the US. Duke University is one of those program sites.  This national network of medical research institutions collaborates to support high quality clinical and translational research locally, regionally and nationally. CTSA is focused on getting more treatments to more patients more quickly. They catalyze innovation in training, collaboration, patient and community engagement, and new methodologies.

With the focus now being on the patients there is a group Patient Centered Outcomes Research Institute (PCORI) that was created with the mission to help people make informed health care decisions, improve health care delivery and outcomes, by producing and promoting high integrity, evidence-based information that comes from research guided by patients, caregivers and the broader health care community.

Day 1 ended with the discussion of how important it is to work together and share success stories, as well as, non-success stories. Rare Disease impacts 1 out of 10 Americans, billions are spent annually in medical costs and care of patients. There are several networks where organizations that share some of the same symptomology have teamed up together to share ideas and resources.

Day 2 opened with a presentation from Dr. Story Landis about the Brain Initiative.  This national effort is being led by the NIH, FDA, Defense Advanced Research Projects Agency (DARPA), and the National Science Foundation(NSF). This initiative will accelerate the development and application of new technologies to produce dynamic pictures of the brain that show how individual brain cells and complex neural circuits interact at the speed of thought. These technologies will open new doors to explore how the brain encodes, stores, and retrieves vast quantities of information, and shed light on the complex links between brain function and behavior. This is a 12 year scientific vision with the aim to map the circuits of the brain, measure the fluctuating patterns of electrical and chemical activity, and understand how their interplay creates our unique cognitive and behavioral capabilities. This project is being done now because 100 million Americans suffer from devastating brain disorders at some point in their lives.

We were also given the opportunity to sit down with our program director and the other patient advocate groups that are part of this network. We were able to discuss what our group is doing and our areas of concern where NINDS can assist us. We discussed funding opportunities and ways we can all work together.

We concluded the day with a recap of the conference and planning for next years meeting.

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