Huntington’s Disease Society of America Designated Center of Excellence
The multidisciplinary Huntington’s disease clinic offers access to a variety of services all in one Center and in one clinical visit:
- Clinical Psychology
- Genetic Counseling
- Social Work
- Occupational Therapy
- Physical Therapy
- Speech Therapy
At world-class facilities such as ours, “patients benefit from expert neurologists, psychiatrists, therapists, counselors and other professionals who have deep experience working with families affected by Huntington’s Disease and who work collaboratively to help families plan the best Huntington’s Disease care program throughout the course of the disease.” -HDSA
Genetic Testing & Counseling
Tremendous HD Advances:
The scientific community has made tremendous advances in Huntington’s disease research and we are beginning to study new experimental medications which have the potential to slow the progression of Huntington’s disease. Preliminary data based on animal models of Huntington’s disease suggests that potentially disease slowing treatments might be most effective if applied early in the disease. It is not certain that these investigational medications will work in people and so clinical trials in humans with Huntington’s disease are needed to demonstrate that these interventions are indeed safe and effective.
Reasons to Test
Reasons for some patients to consider pre-symptomatic genetic testing include the following: 1. Information to best allow Life planning purposes to decide about future career or other life decisions; 2. for family planning purposes to determine whether or not once children may be at risk of developing Huntington’s disease; 3. For psychological reasons since living with the uncertainty of whether or not one is going to develop Huntington’s disease may be extremely stressful for many patients; 4. To allow one to be proactive in taking advantage of the ability to participate in research studies that may slow the progression of Huntington’s disease.
Learn about Clinical Trials
We are currently enrolling Huntington’s disease patients in an observational and clinical trial.
Pre-symptomatic genetic testing may be considered by patients who have a family history of Huntington’s disease who wish to know if they will definitely develop Huntington’s disease. The decision to obtain this information is often a difficult one and patients need to be psychologically prepared to receive this information. We work with each individual considering presymptomatic genetic testing to help determine whether or not they are prepared to undergo this process and received this information. Patients who are considering recent genetic testing are first interviewed by our social worker who obtains basic information about the patient, any clinical symptoms that may be worrisome for Huntington’s disease, and information about the patient’s family history of Huntington’s disease. Information about the pre-symptomatic testing protocol provided in significant detail to patients at this time.