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Consistent with most HD centres of excellence, the Manchester Centre for Genomic Medicine (MCGM) invites eligible individuals to participate in the observational study, Enroll-HD. Limited research has been conducted to date on the views of research participants and the possible impact of participation. The aim of this qualitative study was to explore the experiences of ten individuals taking part in the Enroll-HD study following pre-symptomatic testing for HD. Half of the individuals had tested positive for the HD mutation and the other half had tested negative. Participants were generally motivated to take part in the study by both personal and altruistic reasons. Overall, they were very positive about participation in Enroll-HD. Valuable aspects included good relationships with the research\/clinical team, increased understanding of the condition, an enhanced self-image and a shared experience with affected parents. Issues for improvement to encourage participation included access to study site and more regular communication about study progress. Participants, while generally optimistic about research progress, were realistic about challenges.<\/jats:p>","DOI":"10.1007\/s12687-020-00459-3","type":"journal-article","created":{"date-parts":[[2020,3,10]],"date-time":"2020-03-10T08:02:46Z","timestamp":1583827366000},"page":"421-432","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":3,"title":["\u201cIt\u2019s being part of the big picture, even though you\u2019re a tiny jigsaw piece\u201d\u2014motivations and expectations of individuals participating in the Enroll-HD observational study"],"prefix":"10.1007","volume":"11","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-3737-3922","authenticated-orcid":false,"given":"E.","family":"Davies","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"D.","family":"Craufurd","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"R.","family":"MacLeod","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"297","published-online":{"date-parts":[[2020,3,10]]},"reference":[{"key":"459_CR1","doi-asserted-by":"publisher","first-page":"283","DOI":"10.4103\/2249-4863.120767","volume":"2","author":"M Andrades","year":"2013","unstructured":"Andrades M, Kausar S, Ambreen A (2013) Role and influence of the patient\u2019s companion in family medicine consultations: \u201cthe patient\u2019s perspective.\u201d. 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Approval was granted on 16th January 2017 under the existing terms of the \u201cPEGS: Patients Experiences of living with a genetic condition and utilising clinical Genetic Services\u201d study (REC reference: 15\/NW\/0013. IRAS project ID: 134748).","order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Compliance with ethical standards"}},{"value":"All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5).","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Compliance with ethical standards"}},{"value":"Informed consent was obtained from all individual participants included in the study.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Compliance with ethical standards"}},{"value":"The authors declare that they have no conflict of interest.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Conflict of interest"}},{"value":"This article does not contain any studies with animals performed by any of the authors.","order":5,"name":"Ethics","group":{"name":"EthicsHeading","label":"Animal studies"}}]}}