What it means to be an HDSA "Center of Excellence"
What it means to be an HDSA Center of Excellence
All Centers of Excellence maintain an active HD clinic. The clinic not only serves patients already diagnosed with HD, but is also equipped to provide pretest counseling and genetic testing. Centers of Excellence typically have a staff of specialists who can help with issues specific to HD. For example, many Centers have physical therapists, neurologists, genetic counselors and speech therapists. This specialized staff is not the only reason why Centers of Excellence are especially qualified to treat HD. Everyone working at the Center also has a familiarity with the disease. The Staff at Centers of Excellence know what individuals with HD and their families need based on extensive experience. The Centers also always have the most recent and accurate information available.
Additionally, every Center of Excellence can offer patients the opportunity to participate in clinical trials and other HD research opportunities. Many centers are part of the Huntington's Study Group (HSG). HSG is a nonprofit group of healthcare providers based in the United States, Europe, Canada, and Australia who join together to conduct clinical research trials. By organizing and coordinating research across large numbers of sites, HSG can conduct comprehensive clinical trials. To visit the HSG website, click here (http://huntington-study-group.org/) Participating in clinical trials can be a way to contribute to the HD community and become part of the effort to improve the lives of those affected by the disease.
All HDSA Centers of Excellence engage in educational outreach. The centers have several ways of providing information about the disease. Centers will usually have comprehensive literature available at the clinic for patients. This can be especially helpful for individuals who have recently discovered they have HD. Additionally, some centers hold conferences where many groups and individuals can gather and exchange information. These conferences let researchers, doctors, organizations and others committed to treating and caring for HD patients stay on the forefront of the latest research findings. Finally, many Centers attempt to share their expertise with other medical workers caring for HD patients. For instance, the Center can send staff directly to local nursing homes to provide HD specific training, information, and assistance to the nursing home staff. This outreach is an important aspect of the Centers’ mission to provide care and service to the HD community.
Last Modified: 05/22/2009
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