This chapter explains what it means to be an HDSA “Center of Excellence”. We begin with a brief description of HDSA, the organization that names Centers of Excellence. Next we describe many of the services that the Centers of Excellence offer. We include a description of what an HD patient could expect during a first visit to a Center of Excellence clinic. And finally, we give a full list of the HDSA Centers, with contact information for each.
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The Huntington’s Disease Society of America^
There are nineteen HDSA Centers of Excellence located in the United States.
All of these Centers have specialized HD programs and reputations for first-rate treatment. But how are they chosen and what exactly is required to become a Center of Excellence?
Centers of Excellence are chosen by the Huntington’s Disease Society of America (HDSA). HDSA is a national nonprofit health organization dedicated to finding a cure for Huntington’s Disease and to providing support for everyone affected by HD – both patients and their families. For more information about HDSA, or to contact HDSA, click here.
By recognizing some of the best HD clinics in the nation, HDSA hopes to promote the highest standards of care. To qualify as a Center of Excellence, an HD clinic must provide comprehensive services, have a reputation for excellent medical care, and demonstrate a commitment to HD education and research.
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. 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.
The Role of the HD Clinic^
Many newly diagnosed HD patients do not know what to expect from an HD clinic. The thought of going to a clinic specifically focused on HD can seem intimidating and daunting. The goal of this section is to give a brief description of what happens during a first time visit to an HD clinic. Hopefully, this knowledge will help make the experience easier and more comfortable for everyone involved.
In many ways, going to an HD clinic is much the same as a normal doctor’s visit. The main difference is that the clinic staff members are guaranteed to have specialized knowledge about HD. Although the staff will always tailor treatment to the individual patient, they have a broad base of experience to draw upon; they understand what it means to have HD and to be at risk for HD. Additionally, the clinic may have resources helpful to HD patients that a regular doctor wouldn’t have (such as HD-experienced physical therapists, social workers, genetic counselors, etc.).
During a first visit the patient will always see a doctor. They may or may not see other HD specialists depending on individual circumstances. Most of the time they will see other specialists during follow-up visits. The length of time between visits varies dramatically depending on individual circumstances. If the doctor decides that only a routine follow-up visit is required, the next visit may be scheduled for one year later. If the doctor has a specific issue he or she wants to address, a follow-up visit may be scheduled as soon as one month later. There is no standard length between visits – it is entirely dependent on the patient’s needs and desires.
Finally, HD clinics at Centers of Excellence are active in current clinical trials. This is one of the requirements a clinic must meet to be chosen as an HDSA Center of Excellence. Depending on the status of ongoing trials, the clinic could offer patients the opportunity to participate. These clinical trials provide a chance to contribute to HD research. The exact nature of the available trials will vary from clinic to clinic and change over time.
We hope patients, or potential patients, will not feel intimidated by the idea of visiting an HD clinic. The clinics exist to help and support the patients and their families. Clinic doctors and personnel understand the difficulties of living with HD and their goal is to offer the best care available. We suggest that everyone in the US with HD and their families consider a visit soon to an HD Center of Excellence, if they haven’t already.
List of HDSA Centers of Excellence^
For an interactive map, listing HDSA centers of excellence by state, click here.
New England HDSA Center of Excellence
Charlestown , MA 02129
Director: Steven Hersch, M.D.
Center Contact: Jamie Hill
HDSA Center of Excellence at the University of Rochester
Rochester , NY 14620
Directors: Kevin Biglan, M.D., MPH and Frederick Marshall, M.D.
Center Contact: Leslie Briner
HDSA Center of Excellence at Columbia Health Sciences/NYS Psychiatric Institute
New York , NY 10032
Directors: Karen Mardner, M.D.
Center Contact: Debbie Thorne
George G. Powell HDSA Center of Excellence at North Shore University Hospital
Manhasset , NY 11030
Director: Andrew Feigin, M.D.
Center Contact: Patricia Lambert
HDSA Center of Excellence at Johns Hopkins University/Johns Hopkins Hospital
Baltimore , MD 21287
Directors: Christopher Ross, M.D., Ph.D. and Adam Rosenblatt, M.D.
Center Contact: Debbie Pollard
HDSA Center of Excellence at the University of Virginia
Charlottesville , VA 22903
Director: Madaline Harrison, M.D.
Center Contact: Pat Allinson, M.S.
HDSA Center of Excellence at Emory School of Medicine
Atlanta , Ga. 30329
Directors: Randi Jones, Ph.D. and Claudia Testa, M.D., Ph.D.
Center Contact: Joan Harrison, G.N.P.
HDSA Center of Excellence at the Univeristy of South Florida Huntington’s Disease Clinic
Tampa, FL 33612
Director: Juan Sanchez-Ramos
Center Contact: Kelly Elliott, RN
HDSA Center of Excellence at Ohio State University
Columbus , Ohio 43210
Director: Sandra Kostyk, M.D., Ph.D.
Center Contact: Nonna Stepanov
HDSA Center of Excellence at University of Iowa Hospitals and Clinics
Iowa City , Iowa 52242
Directors: Jane Paulsen, Ph.D. and Robert Rodnitsky, M.D.
Center Contact: Anne Leserman
HDSA Center of Excellence at Hennepin County Medical Center
Minneapolis , MN 55415
Director: Martha Nance, M.D.
Center Contact: Dawn Radtke, RN
HDSA Center of Excellence at Washington University School of Medicine
St. Louis , MO 63110
Director: Joel Perlmutter, M.D.
Center Contact: Stacey Barton, MSW, LCSW
HDSA Center of Excellence at Rush University Medical Center
Chicago , IL 60612
Director: Kathleen M Shannon, M.D.
Contact: Jean Jaglin, RN, CRC
HDSA Center of Excellence at Indiana University
Indianapolis, IN 46202
Directors: Kimberly A Quaid, Ph.D and Joanne Wojcieszek, M.D.
Contact: Leo Rafail, BSW
West and Pacific Northwest^
HDSA Center of Excellence at University of Washington
Seattle , Wash. 98195
Director: Thomas Bird, M.D.
Center Contact: Debbie Olsen (general info)
HDSA Center of Excellence at University of California Davis Medical Center
Davis Medical Center
Sacramento , Calif. 95817
Directors: Vicki Wheelock, M.D.
Center Contact: Teresa Tempkin R.N.C., M.R.N., A.N.P.
HDSA Center of Excellence at University of California, San Diego
San Diego , Calif. 92103
Directors: Jody Corey-Bloom, M.D., Ph.D.
Center Contact: Jody Goldstein
HDSA Center of Excellence at University of California, Los Angeles
Los Angeles , Ca 90095
Director: Susan L Periman, M.D.
Center Contact: Sakena Patterson
HDSA Center of Excellence at Baylor College of Medicine
Houston , Texas 77030
Director: Joseph Jankovic, M.D.
Center Contact: Alicia Palao
For Further Reading^
- http://www.hdsa.org- The official website of the Huntington’s Disease Society for America.
- http://www.huntington-study-group.org/ – The official website for the Huntington Study Group. This site contains information concerning ongoing clinical trials, as well as brief summaries of previously completed trials.
-A. Hepworth, 1-24-07, updated 6-21-11