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Patient Information

The Center offers a number of multidisciplinary clinical services as well as opportunities to participate in clinical research for patients with Huntington's disease (HD) and their families.

  • The Clinical Evaluation Program provides initial clinical evaluations for HD patients and neurological testing for individuals who carry the abnormal gene but do not have symptoms.
  • The Continuing Care Program which provides medical care, education and support services.

Social work services provided in both programs include case management, community resource referrals, housing assistance, and long-term care placements.

Patients with acute medical or psychiatric problems can be hospitalized at The Johns Hopkins Hospital or other area hospitals. Center staff members are available for counseling, consultation, and emergency referral services. We maintain strict confidentiality standards throughout our practices.

All outpatient testing and medical care takes place in the Huntington's Disease Center at Meyer 2-181 at The Johns Hopkins Hospital.

Contact Us

For all clinical appointments, please call 410-955-2398

Huntington's Disease Center at Johns Hopkins
600 North Wolfe Street, Meyer Building, 2nd floor, Room 181
Baltimore, MD 21287

Phone: 410-955-2398

Clinical Evaluation

Supported by the National Institute of Neurological Disorders and Stroke (NINDS) and the Huntington's Disease Society of America (HDSA), this program was founded in 1980 to provide services to individuals with Huntington's disease (HD). Diagnostic evaluations are conducted patients with Huntington's disease and related disorders. Patient may be referred by area neurologists or other physicians, or they may be self-referred. The evaluation clinic is held every Tuesday from 1-4 pm in Meyer 2-181 at The Johns Hopkins Hospital.

During the evaluation clinic, a detailed family and medical history will be obtained and a neurological and psychiatric examination will be conducted. Our extensive knowledge of families with HD in the mid-Atlantic area allows us to determine if an individual can be linked to an existing HD family of if they come from a new family. If individuals are already showing signs and symptoms of HD, genetic testing for HD and related disorders can be done on a diagnostic basis. All these services are provided with support of an National Institute of Health (NIH) research grant. A social work evaluation is also provided as part of the clinic session.

Patients are required to have a primary care physician in the community for non-Huntington's related medical care. Members of the Center interdisciplinary team may see patients for further consultation and follow-up as appropriate.

Services are provided:

  • Diagnostic evaluations
  • Symptomatic genetic testing
  • Consultations
  • Follow-up care
  • Case management
  • Individual and family counseling
  • Referrals to occupational or phsycial therapy or other medical evaluations
  • Predictive genetic testing

Continuing Care Program

The Continuing Care Program offers ongoing medical care, education, and support services for persons with Huntington's disease (HD) and their families.

Our multidisciplinary team works with patients and families to develop a personalized program of medical care. Community referral and case management services are integral components of the treatment team's approach. Patients are required to have a primary-care physician in the community for non-HD related medical care.

The clinic currently meets on Wednesdays in Meyer 2-181 at The Johns Hopkins Hospital and provides ongoing HD treatment through environmental interventions, medications, education, and counseling. Patients are seen by a neuropsychiatrist specializing in HD as well as by our social worker. A variety of additional services are available, including occupational and physical therapy, and speech and swallowing evaluations.

Our social worker is available for consultation both during and outside of clinic hours on Mondays, Tuesdays, and Wednesdays. She offers evaluation and counseling and can assist in disability applications and nursing home placement. In addition, she runs a monthly support group.

The services of this clinic are provided on a fee-for-service basis. Some private insurance is accepted as well as Medicare and Medicaid. Because the clinic is supported by the Huntington's Disease Society of America HDSA, we can apply a sliding-scale based on income and we provide services for all patients and families.

Services provided:

  • Follow-up care
  • Consultations
  • Case management
  • Individual and family counseling
  • Referrals to occupational or physical therapy or other medical evaluations
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