Monday, June 24, 2013


Last week the National Institute of Neurological Disorders and Stroke held a workshop that brought together investigators, study coordinators, patient advocacy groups, clinicians, NIH representatives and others to discuss how we can enhance recruitment to and retention in neurological clinical studies.  I was proud to be invited to participate in the patient-centered research in neurology workgroup.  
The workshop, INSPIRE (Improving Neurological Subject (and Provider) Participation in the Research Enterprise) had an ambitious agenda – to produce ideas and tools that can be used to help recruit study participants and to keep those who are engaged in the trials.  It was an opportunity to express the barriers and frustrations that many study participants experience when they do enroll in studies.  
Having patient centered trials helps to ensure that the patient voice is represented throughout the process – something that is so important to success.  Without trials there are no new treatments.  Participating in a clinical trial is so very important and an action that serves the entire community.  I was so pleased to be there and so happy that dystonia was included in this important discussion.  The INSPIRE program will continue and I will keep you updated on the recommendations and progress.

Tuesday, June 18, 2013

Jan Teller is DIA Paitient Advocate Fellow

Congratulations to Jan Teller, DMRF’s Chief Scientific Officer on his recognition from the Drug Information Association (DIA) as a Patient Advocate Fellow.  Dr. Teller will represent the DMRF at the upcoming DIA annual meeting in Boston, MA.  He is one of 19 representatives selected from patient organizations working on rare or underrepresented diseases.

While at this national meeting, Dr. Teller will meet on drug discovery, management of pharmaceuticals, biotech, medical devices and other clinical applications. Fellows will also be given a unique opportunity to meet with policymakers, industry representatives, and research institutions.  It is good to know dystonia will be represented so well at this important meeting.  Many thanks to Dr. Teller for his efforts here and with all he does for the dystonia community. Way to go!!

Dr. Teller (left) works closely with DMRF Scientific Director Mahlon R. DeLong, MD, Professor of Neurology, The Emory Clinic, on all aspects of the DMRF Science Program.