Funded By:
Study of Duchenne Muscular Dystrophy
The Rehabilitation Research Center for the Study of Neuromuscular Diseases at the University of California , Davis , in partnership with the Center for Genetic Medicine at Children's Hospital in Washington D.C., is conducting a study of persons with Duchene muscular dystrophy (DMD). This five-year study will document the natural course of the disease. It will collect the information that doctors usually acquire during routine examinations and use it to provide a picture of the abilities and impairments of those with DMD as the disease progresses. A study such as this has not been conducted since the 1980s. With improvements in clinical care in the last 15 – 20 years and advances in genetic analysis it is necessary to conduct another study that will update the documentation of the natural history of DMD. A second part of the study will examine the composition of the gene that is responsible for controlling the production of the dystrophin protein, the protein that is abnormal or lacking in DMD. With the genetic information that is available today, it will be possible to see if particular genetic abnormalities (single nucleotide polymorphisms) can be related to response to treatment or to particular characteristics of the disease progression.
For further information on this study contact Ted Abresch at UC Davis, (tabresch@ucdavis.edu) at the University of California, Davis, Center for the Study of Neuruomuscular Diseases (RRTCNMD) .
The web site of Children's Hospital in Washington , D.C. ( http://www.cinrgresearch.org/UCD0305.shtml) will also have information.
The other partners in the cooperative International Neuromuscular Research Group (CINRG) will be accepting patients into this study in the future. Keep your eye on the UC Davis RRTC web site or the CINRG web site for announcement of their participation in this study.
The Partnership for Human Research Protection, Inc. (PHRP) is launching a national campaign to educate people considering participating in clinical research trials about the risks and benefits of clinical research. PHRP is a collaboration between the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) and the National Committee for Quality Assurance.
The U.S. Department of health & Human Services, Office for Human Research Protections (OHRP) has also published a brochure for those interested in becoming a research volunteer. The brochure is availble for down load at the OHRP web site. There is also a toll free telephone number to order free copies of the brochure. Click here to accesss the site. There are also links to other web sites that list clinical trials and to a list of questions you can use in evaluation of your participation in a clinical research study.
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