1 - To change the current diagnostic criteria to include cognitive, psychiatric, behavioral, and vegetative decline for diagnosis via the UHDRS.
UHDRS Q80 should be changed: Q80 diagnostic criteria (Motor, Cognitive, Behavioral, and Functional components) do you believe with a confidence level ≥99% that this participant has manifest HD? (0 = No, 1 = Yes)
Confidence level ≥99% should be changed to ≥50%
2 - If a patient has an expanded CAG (mutation above normal range) and expresses cognitive, psychiatric, behavioral, or vegetative decline, the patient should receive a diagnosis of Huntington's disease. A diagnosis for patients with these symptoms of Huntington's disease will facilitate the necessary supports and services they need.
Current Diagnostic Criteria for Huntington's Disease:
Does not meet the needs of our patients and families.
Excludes a large group of our patients who do not express overt motor symptoms (chorea).
Does not effectively support our patients who have manifested: psychiatric, cognitive, behavioral, and vegetative symptoms of Huntington’s disease.
Project CHANGE partnering HD organizations and medical professionals wish to underscore that a diagnosis of Huntington's disease is not for everyone. This is not our aim. We fully understand and recognize the implications of a diagnosis.
*Any diagnostic procedure, either predictive or clinical, can only be administered with the fully informed consent of the person seeking that information. All meaningful diagnostic and supportive procedures must be offered and performed at the person's wish, but no unwanted tests or procedures must be forced upon that person.
*It must be explained that the diagnosis of HD has far-reaching consequences for the entire family of the person requesting diagnostic information. It must also be explained that there is no specific moment of disease onset, but that HD is a continuous process from normal brain function to the clinical stage with gradually increasing disabilities.
*For additional insight on this project, please watch the WeHaveAFace TV episodes.
Please review the proposed updated Huntington's diagnostic criteria, and take the poll! The community has spoken!