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Research Opportunities HD/JHD Patients & Caregivers Study A Speech-Language Pathology graduate student (Paige Wikman) and her professor (Dr. Therese O’Neil-Pirozzi) at Northeastern University in Boston are doing an IRB-approved study to explore perspectives of individuals with Huntington’s Disease and their caregivers in areas of quality of life and eating/swallowing (link to study flyer). They are interested in how self-reports of individuals with Huntington’s Disease compare to those of their caregivers in these areas. If you have a medical diagnosis of Huntington’s Disease, you and a caregiver who knows you well, may be eligible to participate in this 20-30 minute-long study. If you are interested in participating or would like to know more about this study, click the button below to schedule a time with Paige or email her at (wikman.p@northeastern.edu) for more information. Schedule a Meeting

Healthcare Resources Genetic Testing Genetic testing allows an individual who is at-risk of having Huntington's Disease know with certainty if they have the disease. Every individual has two copies of each gene, one inherited from the mother and the other from the father. Huntington's disease patients have an unusually high number of CAG repeats in either of the two HTT gene copies. ​ Those with a repeat of 26 or fewer are "normal." A repeat of between 27 to 35 are in "the intermediate range." In this area, although the patient will not develop the disease, they are still at-risk of passing it on to they children. With CAG repeats between 36-39, it cannot be predicted with certainty whether the individual will develop Huntington’s disease. CAG repeats that are 40 and above are considered "gene-positive." This means at some point in your life you will develop the symptoms of the disease, but there currently is no way to know for certain when and how severely the onset of those symptoms will come. ​ Children who become symptomatic at a young age and have a very unusually high CAG repeat number have what is known as Juvenile Huntington's Disease . This is a children's version of the disease that has a much earlier onset age and a more rapid onset of symptoms. Most JHD patients usually have between 80 and 100 CAG repeats. LEARN MORE ABOUT GENETIC TESTING PicnicHealth If you are living with HD and are looking for tools to help access & organize your medical records and ways you can contribute to your community, join PicnicHealth. ​ PinicHealth is a health tech company that understands how challenging it is to access and share your medical records when you need them. With their technology, they do all the work of retrieving and organizing all of your (or your loved ones) records (including imaging!) in one place so you have it at your fingertips whenever you need it. With your consent, they help leverage the de-identified data found within these medical records, allowing you to contribute to real-world data research from home. ​ Reasons to Register PicnicHealth’s mission and commitment to advancing research in the HD community Picnic's technology can help improve how you manage your care What “real world data” is and how it can help transform research in HD Your story and voice matter! ​ Learn more and sign up here . You will receive $200 upon confirmation of a Huntington's Disease (HD) diagnosis or Positive genetic test for Huntington’s Disease. JOIN PICNICHEALTH

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