{"id":1206,"date":"2026-03-12T11:00:00","date_gmt":"2026-03-12T11:00:00","guid":{"rendered":"https:\/\/services.nhslothian.scot\/neuroprogressiveanddementianetwork\/?page_id=1206"},"modified":"2026-03-12T11:41:24","modified_gmt":"2026-03-12T11:41:24","slug":"enroll-hd","status":"publish","type":"page","link":"https:\/\/services.nhslothian.scot\/neuroprogressiveanddementianetwork\/enroll-hd\/","title":{"rendered":"Enroll-HD"},"content":{"rendered":"\n
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A Prospective Registry Study in a Global Huntington\u2019s Disease Cohort<\/h1>\n\n\n\n

Enroll-HD: An observational, prospective, multi-national, multi-centre study without experimental treatment<\/h3>\n<\/div><\/div><\/div><\/div><\/div>\n\n\n\n
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\"Enroll<\/figure>
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Project Details<\/strong><\/p>\n\n\n\n

Start Date
March 2024<\/strong><\/p>\n\n\n\n

Status
Open to Recruitment<\/strong><\/p>\n\n\n\n

Principal Investigator
Dr Peter Foley<\/a><\/p>\n\n\n\n

NDN Study Lead
Emma Fleming<\/a><\/p>\n\n\n\n

Main Research Site
Western General Hospital<\/strong><\/p>\n<\/div><\/div>\n\n\n\n

This research study is trying to speed up the development of treatments for Huntington\u2019s disease<\/strong> by gathering data to better understand the disease’s progression.<\/p>\n\n\n\n

What Happens In This Study?<\/strong><\/p>\n\n\n\n

You will take part in several physical and cognitive assessments, as well as a blood test to check the number of CAG repeats in your huntingtin gene. This happens for every participant, whether they know their gene status or not.<\/p>\n\n\n\n

Can I Join This Study?<\/strong><\/p>\n\n\n\n

To take part in this medical trial, you must meet these 4 requirements<\/strong>:<\/p>\n\n\n\n

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  1. Your Diagnosis:<\/strong> Both people with and without<\/strong>, either a diagnosis of HD OR carrying the HD gene mutation<\/strong>, can take part.  <\/li>\n\n\n\n
  2. Your Age:<\/strong> People of all ages are allowed to take part<\/strong>. Children under the age of 18 with a diagnosis of juvenile HD can participate in Enroll-HD with the consent of a parent or legal guardian.<\/li>\n\n\n\n
  3. Your Genes:<\/strong> You do not need to know your gene status<\/strong>. <\/li>\n\n\n\n
  4. Your Time:<\/strong> You must do your best to attend your study visits.<\/li>\n<\/ol>\n\n\n\n

    Study Length<\/strong>: Enroll-HD doesn\u2019t have an end date. You\u2019ll be asked to come back for a return visit once a year. You can leave the study at any time.<\/p>\n\n\n\n

    Number of appointments<\/strong>: 1 per year<\/p>\n\n\n\n

    More information on the trial can be found on the Enroll-HD website<\/a>.<\/p>\n<\/div><\/div>\n\n\n\n