Government Funds
Quality-of-Life Studies in
Neuromuscular Diseases

The National Institute for Disability and Rehabilitation Research (NIDRR), a division of the U.S. Office of Special Education and Rehabilitation Services, has given the Rehabilitation Research and Training Center for the Study of Neuromuscular Diseases at the University of California at Davis $4 million to study quality-of-life issues for people with neuromuscular diseases.

The U.C. Davis group says its mission is to “enhance the quality of lives of persons with neuromuscular diseases,” a mission that includes exploration of options in education, employment, family life and community participation. The group notes that MDA is part of its network of research partnerships.

The planned projects include:

• a study of the relationship between impairment, activity limitation, participation and quality of life in Duchenne muscular dystrophy (DMD)
• an evaluation of the impact of surgical and medical rehabilitation technologies in DMD and type 2 spinal muscular atrophy on health, wellness and community integration
• a study of the impact of pulmonary technologies on hospitalizations, pain, community integration and quality of life in DMD
• the development and evaluation of new technologies that measure physical activity and nutritional energy balance in people with disabilities; and
• a study of the impact of impairment, pain and environmental barriers on participation in community recreation and exercise in adults with type 1 myotonic dystrophy, facioscapulohumeral muscular dystrophy and Charcot-Marie-Tooth disease, as well as in a group of adults without any neuromuscular disease.

For more information, visit www.rehabinfo.net/default.asp.