Attention 2.0 Professional Edition, Summer 2010

The Importance of Translational and Clinical Research

A National Institute of Neurological Disorders and Stroke (NINDS) Nonprofit Forum

May 19, 2010

CHADD works closely with colleagues at the National Institutes of Health to ensure that the interests of our members are represented. CHADD sends a representative to meetings with mental health advocacy groups held by various NIH departments, including the National Institute of Mental Health, the National Institute of Neurological Disorders and Stroke, and so forth. What follows are some of the highlights about research from one of the most recent meetings.

The morning started with an overview of how NINDS is working to accelerate the process of taking scientific discoveries and turning them into practical treatments and applications that benefit patients. The speakers, including NINDS Director Story Landis, PhD, were genuine and sincere in their delivery of a message stressing collaboration between government, academia, biopharma, and patient advocacy groups in order for translational research to be successful. They reiterated that their goal is to improve the pathways by which new scientific discoveries, including drug compounds, are brought to market so as to improve the lives of patients in need.
Throughout the day, the directors of each of the seven offices that comprise NINDS spoke of the barriers, including the lengthy amount of time that researchers in both government, academia, and biopharma institutions face during the evolution of a scientific discovery into a practical treatment or solution that will benefit patients in need. The underlying theme of many of the presentations was that of partnering in therapeutic development. NINDS recognizes that no one institution has sufficient expertise to address scientific and medical research needs. Partnerships between biopharma, academia and government institutions are critical to accelerate scientific discovery, and ensuring that their discoveries reach the intended patient populations sooner rather than later.
Harold Kohn, PhD, an organic chemist, spoke about the process and length of time it takes for a theoretical idea to evolve into a chemical compound that can then be evaluated though clinical trials, and then eventually marketed commercially to a patient population in need. Kohn is the researcher credited with the discovery of the active chemical component in Vimpat, a new antiepileptic drug. He spoke to the group about his own three decade long experience in which Vimpat evolved from a theory to a commercially available medication used to treat epilepsy. He spoke candidly of the hurdles and barriers that he and his team faced to take his idea and bring the drug compound that he developed to market. After Kohn spoke, a Vimpat patient gave an account of her life with epilepsy and how her life improved dramatically since she began taking Vimpat. She was given the opportunity to publically thank him.
The afternoon session focused on patient organizations as leaders. The NINDS team spoke of the ongoing crisis that research institutions face in recruiting suitable participants in clinical trials. They spoke of opportunities to increase patient participation in clinical trials, such as patient registries. The NINDS speakers stressed that collaboration with patient advocacy groups to establish patient registries is critical. The Parkinson Disease Foundation (PDF) was on hand to discuss its approach to the challenge of low clinical research participation rates in Parkinson’s disease research. PDF spoke about how most patients are unaware of the availability of clinical trials. PDF developed a website, www.pdtrials.org, which seeks to improve patient access to clinical trial information by centralizing the information in one place. By visiting this website, Parkinson’s disease patients can learn more about how to make informed decisions about participating in clinical trials, and interested patients can easily locate clinical research opportunities. 

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