{"id":1735,"date":"2026-03-09T15:39:00","date_gmt":"2026-03-09T15:39:00","guid":{"rendered":"https:\/\/services.nhslothian.scot\/neuroprogressiveanddementianetwork\/?page_id=1735"},"modified":"2026-03-09T16:55:53","modified_gmt":"2026-03-09T16:55:53","slug":"healthe-rnd","status":"publish","type":"page","link":"https:\/\/services.nhslothian.scot\/neuroprogressiveanddementianetwork\/healthe-rnd\/","title":{"rendered":"HealthE-RND"},"content":{"rendered":"\n
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European eHealth Care Model for Rare Neurodegenerative Diseases: Development of HD-specific outcome measures <\/strong><\/h1>\n\n\n\n

HealthE-RND: Development and validation of multilingual, multinational HD specific need-based QoL assessment tools<\/strong><\/h3>\n<\/div><\/div><\/div><\/div><\/div>\n\n\n\n
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\"HealthE<\/figure>
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Project Details<\/strong><\/p>\n\n\n\n

Start Date
February 2022<\/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
Jacqueline Kerr<\/a><\/p>\n\n\n\n

Main Research Site
Your home<\/strong><\/p>\n<\/div><\/div>\n\n\n\n

This research study is trying make it easier for people with Huntington\u2019s disease<\/strong> to get care from different health professionals by using a multilingual e-health platform.  
The NDN, along with NHS Lothian Huntington’s service, are involved in recruitment to module 1 of the international HealthE-RND study. Module 1 involves creating a new tool to measure quality of life, and the effect of care and support on patients and their carers<\/p>\n\n\n\n

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

You will complete questionnaires.<\/p>\n\n\n\n

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

This study is set up as an Enroll-HD<\/a> associated study, therefore you should already be participating in Enroll-HD<\/a>.<\/strong><\/p>\n\n\n\n

To take part in this research study, you must also meet these 3 requirements<\/strong>:<\/p>\n\n\n\n

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  1. Your Age:<\/strong> You are 18 years old, or older<\/strong>.<\/li>\n\n\n\n
  2. Your Permission:<\/strong> You must be able to understand what happens in the study and sign a form (called informed consent<\/strong>) to say you agree to join.<\/li>\n\n\n\n
  3. Your Time:<\/strong> You must do your best to complete all the questionnaires on time.<\/li>\n<\/ol>\n\n\n\n

    Study Length<\/strong>: 2 weeks<\/p>\n\n\n\n

    Number of appointments<\/strong>: 0 visits (you will be sent out two sets of questionnaires to complete)<\/p>\n\n\n\n

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