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КЛИНИЧЕСКИЕ НАБЛЮДАТЕЛЬНЫЕ ИССЛЕДОВАНИЯ В ЕВРОПЕ

КЛИНИЧЕСКИЕ НАБЛЮДЕНИЯ В РОССИИ?

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BIOHD is studying ‘biomarkers’ that predicts the progression of Huntington’s disease. The study is therefore trying to find markers in the blood, through imaging, and psychological tests. In doing so, clinicians might be better at predicting how Huntington’s disease will progress in people who carry the mutated gene. 

What is a biomarker? It is a measurable indicator of a disease or condition. It can for instance be a level of something in your blood or hormon levels. Biomarkers are often measured and evaluated to examine normal biological processes – like measuring the level of hemoglobin in your blood or your blood pressure. In reference to research on Huntingtons disease, a biomarker is an indicator of disease progression. 

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The aim of the study is to establish if caffeine consumption is associated with the evolution of the disease in premanifest HD.

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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.

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Added: Enroll-HD is a worldwide observational study for Huntington’s disease families. It will monitor how the disease appears and changes over time in different people, and is open to people who either have HD or are at-risk.is open to people who either have HD or are at-risk.People who are at-risk but haven’t been tested can take part in Enroll-HD without knowing or being told their genetic status. The study’s goal is to accelerate the discovery and development of new therapeutics through a better understanding of HD. Understanding how HD typically unfolds will make it much easier to evaluate more quickly whether a new experimental drug is working to slow down or stop those typical changes. Enroll-HD is a prospective observational study, meaning it tracks people over time, rather than asking them to recall how their symptoms have changed.

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The primary goal of the study is to derive biomarkers that could be further developed to measure the efficacy of novel pharmacological treatments for HD.

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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.

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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.

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