Connecticut Affiliate
Institute for Neurodegenerative Disorders
The Institute for Neurodegenerative Disorders (IND), founded in 2001, is an independent 501(c)3 nonprofit research institute based in New Haven, Connecticut. Its team of expert researchers includes neurologists, nurses, study coordinators, neuropsychologists, and nuclear medicine technologists working together to accomplish IND's mission. IND stands as a premier clinical and imaging research facility. A focus of our research is to develop innovative neuroimaging tools to detect neurologic conditions before symptoms appear, make an accurate diagnosis and monitor disease progression. In addition, IND participates in the evaluation of new symptomatic treatments and the development of medications with the potential of slowing disease progression. We envision a future in which research provides methods of early detection and effective treatment and ultimately the prevention of these neurologic conditions.
If you'd like to know more on IND services and research studies please visit IND Huntington Disease Clinical Trials website.
Institute for Neurodegenerative Disorders
Temple Medical Building
60 Temple Street, 8th floor
New Haven, CT 06510
Phone: 800-401-6067, or 203-401-4300
Email: info@indd.org
UCONN Health Center
The Huntington's Disease (HD) Program of the University of Connecticut Health Center provides care, treatment and education to patients with HD and their families. Persons eligible include Connecticut residents who have or are at risk for HD and their family members. The HD Program is also charged with being an educational resource to health services throughout the state of Connecticut. Evaluations are provided free of charge (excluding laboratory tests and/or radiological studies) and consists of a visit with our neuropsychiatrist, psychiatric nurse, clinical social worker and neuropsychologist. In addition, a visit with our genetic counselor can be arranged for those individuals interested in pre-symptomatic testing. When assessments are completed, a multidisciplinary treatment plan is created. The treatment plan may make recommendations for further treatment regarding personal/family counseling, medical treatments, home-based and/or long term care issues. Typically, those patients who are gene positive are seen on a routine basis for follow up. Medical care unrelated to HD is not provided by the clinic.
If you'd like to know more on services, research studies, or to make an appointment with a specialist please visit UCHC Huntingon's Disease Program website.
University of Connecticut Health Center
Huntington's Disease Program
Bonnie Hennig, MSW, LCSW, Social Worker
263 Farmington Avenue
Dowling North, Second Floor
Farmington, CT 06030-6204
Phone: 860-679-4441
COHORT
COHORT, the cooperative Huntington's observational research trial, is a long-term observational study to collect information in order to learn more about HD, potential treatments, and to plan future research studies of experimental drugs aimed at postponing onset or slowing the progression of HD. This study will include adults and children who have clinically diagnosed HD and adults who are a part of an HD family. Individuals who choose to participate will have one study visit every year for as long as they are able and choose to participate. At each annual visit, all individuals participating in COHORT will be required to have a clinical evaluation. Those who are 18 years of age and older will have blood drawn for genetic testing for the Huntington's gene as well as for other genetic differences which may be important for the disease.
If you'd like to know more on these COHORT please visit HDSA COHORT Observational Study website.
For eligibility and other information about trials visit Clinicaltrials.gov.
To find participating groups in your area download the COHORT Participating Site List
Huntington Study Group
The Huntington Study Group (HSG) is made up of clinical researchers worldwide who care for Huntington Disease patients and families. These remarkable people are working diligently to combat this disease, launching research trials for HD throughout the calendar year. Those interested in enrolling and voluteering are greatly appreciated. The combined time and effort given in seeking treatments make a difference the lives of many. For more information call the Huntington Study Group toll-free number at 1-800-487-7671 or visit the Huntington Study Group website to learn about the different studies and trials going on now.
University of Rochester
HSG Administrative Office
Shari Kinel, HSG Executive Director
Phone: 800-487-7671
1351 Mt. Hope Avenue, Suite 223
Rochester, New York 14620