BELANGRIJK
Voordat u aan een onderzoek deelneemt, moet u met uw zorgverlener over de risico's en mogelijke voordelen praten.
The aim of the study is to establish if caffeine consumption is associated with the evolution of the disease in premanifest HD.
Enroll-HD is een wereldwijde observatiestudie voor families met de ziekte van Huntington. De studie volgt op hoe de ziekte zich bij verschillende mensen voordoet en in de loop van de tijd verandert. De studie staat open voor gendragers of zij die risico lopen. Ook personen die niet getest zijn, kunnen deelnemen aan Enroll-HD zonder hun genetische status te kennen of te weten komen. Het doel van de studie is om de ontdekking en ontwikkeling van nieuwe therapieën te versnellen en de ziekte beter te begrijpen. Als beter begrepen wordt hoe de ZvH zich doorgaans ontwikkelt, wordt het veel gemakkelijker om sneller te beoordelen of een nieuw experimenteel medicijn werkt om die typische veranderingen te vertragen of te stoppen. Enroll-HD is een observatiestudie, wat betekent dat mensen in de loop van de tijd gevolgd worden eerder in plaats van beroep te moeten doen op hun herinneringen.
DOMINO-HD focus on aspects of life for people with Huntington’s that haven’t been studied in depth up until now. The study aims to improve quality of life for Huntington’s disease patients and families. DOMINO-HD is therefore investigating how sleep, nutrition and physical activity impact the progression of Huntington’s disease. By learning more about these aspects, we will perhaps be able to develop new ways to support people affected by Huntington’s. The study will also explore how digital technologies, such as wearable fitness trackers, can be used to help people.
The primary objective is to collect a high quality CSF (Cerebrospinal fluid) sample for evaluation of biomarkers and pathways that will enable the development of novel treatments for HD. The secondary objective is to generate a high quality plasma sample collection matching the CSF collections, which will also be used to evaluate biomarkers and pathways of relevance to HD research and development.
The main purpose of REVHD is to be able to confirm whether a protein called Brain Derived Neurotrophic Factor (BDNF) is a biomarker for Huntington’s disease (HD).
Why is this study important? We have good reasons to believe that BDNF has an active role in protecting damaged brain cells as well as enhancing growth of new ones. The study will provide us with more solid information about the connection between BDNF and symptom development in humans with Huntington’s. If proven to be relevant, BDNF levels will probably be a target for treatment in the future. In this study the BDNF levels in cerebrospinal fluid and blood will hopefully be identified as a biomarker for Huntington’s disease.
SHIELD HD is an International study that will follow a group of people over time who have or are at risk of developing Huntington´s Disease. SHIELD HD will collect health information that includes medical history, blood and cerebrospinal fluid samples. Participants will also undergo MRIs, cognitive and motor function tests. The information will be used to evaluate the natural history of HD and its biomarkers that are associated with modulation of the number of CAG (cytosine-adenine-guanine) repeats in the mutant Huntingtin(HTT) gene. The results of this study will inform assessments for a future interventional treatment trial.