An Invitation from the Dystonia Study Group
By Cynthia L. Comella, MD, FAAN
Professor, Department of Neurological Sciences
Rush University Medical Center
One of the challenges in conducting clinical research in a rare disease is the lack of a large number of patients at any one institution. Hence, in rare disorders, it is imperative that researchers collaborate to ensure that progress continues in understanding better therapeutic approaches. The Dystonia Study Group (DSG) is an independent, non-profit, international consortium of researchers who are experienced in the care of dystonia patients and dedicated to clinical research of dystonia. The DSG was founded in 1997 and the constitution and bylaws of the DSG were ratified in 2000. The executive committee of the DSG includes Cynthia L. Comella, MD as Chair; Barbara Karp, MD, as co-chair; Richard Barbano as Secretary/Treasurer and executive committee members Laurie Ozelius, PhD, Thomas Davis, MD, Charles Adler, MD, Hubert Fernandez, MD, Dirk Dressler, MD, Stewart Factor, MD, and Rachel Saunders-Pullman.
The DSG has grown to include 73 dystonia experts from 47 geographically diverse investigative sites. The members of the DSG are committed to the cooperative planning, implementation, analysis, and reporting of controlled clinical studies and of other research and educational activities related to dystonia. To this end, the aims of the DSG are to advance knowledge about the clinical impact of dystonia, to develop scientific strategies to investigate promising therapeutic interventions, and to conduct clinical studies of dystonia. The DSG is committed to the principles of open and full scientific communication and collaboration, peer review, full disclosure of potential conflicts-of-interest, and democratic governance of its organization and activities.
The DSG membership meets annually to discuss progress and new projects. Two large multi-center trials have been successfully carried out by the DSG. These trials included a total of 36 investigators and recruited 242 dystonia patients. Both trials are published and sub-analysis of the study data presented at major neurological meetings. The DSG has partnered with the Dystonia Medical Research Foundation to establish a network of physicians and patients that can be mobilized for clinical trials. In October, 2006, the DSG and DMRF jointly sponsored a dystonia ratings scale workshop that attracted 18 major dystonia researchers, resulting in a report of the strengths and limitations of currently available rating scales and a road map for future scale development. The information from this meeting was used to develop a new protocol to revise and evaluate the Toronto Western Spasmodic Torticollis Scale (TWSTRS). This study is funded and will be conducted at multiple sites in the second quarter of 2009. Rating scales for other focal dystonias are currently being developed, and will be studied in the future. In addition, the DSG is exploring two opportunities to evaluate new therapeutic agents for dystonia, and will be working to implement these as clinical trials in the coming year.
The DSG is currently working with the DMRF in the "Cure Dystonia" initiative, an effort to accelerate the development of more effective treatments for dystonia with the ultimate goal of finding a cure. In collaboration with the DMRF, the DSG has recently developed an easily accessible website to accommodate further growth and disseminate information about current research programs to its membership and those interested in becoming members.
The DSG invites researchers interested in dystonia to join by going to our website at www.dystoniastudygroup.org.
About Cynthia Comella
Cynthia L. Comella, MD, is a Professor in the Department of Neurological Sciences at Rush University Medical Center, Chicago, Illinois. She is board certified in Neurology and Sleep medicine. She is the chair of the Executive Committee of the Dystonia Study Group. She is an active member of The Movement Disorder Society, having served as Chair of the Education Committee since 2002, and is a member of the MDS International Congress Scientific Planning Committee. She received the MDS President's Distinguished Service Award in 2008. In addition, she is a member of the Science Committee of the American Academy of Neurology and on the editorial board of the Continuum. She completed the AAN Palatucci Advocacy Fellowship, and has participated in "Neurology on the Hill" event, an advocacy experience sponsored by the AAN. She currently serves on the executive committee of the Parkinson Study Group, and chairs the Mentorship Committee for that organization.
Dr Comella is on the editorial board of Sleep Medicine, and has served as an ad hoc reviewer for numerous peer-reviewed journals. She conducts an active clinical research program, serving as principal investigator for her site on NIH, foundation and industry sponsored studies. She conducts clinical research programs in botulinum toxins, dystonia, Parkinson disease and sleep-related disorders. Dr. Comella is the author or co-author of more than 165 articles, reviews, research papers, abstracts, books, and book chapters about various topics including Parkinson's disease, dystonia, sleep and sleep-related disorders, restless legs syndrome, and botulinum toxin.