{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,2]],"date-time":"2026-09-02T17:08:54Z","timestamp":1788368934272,"version":"build-2803163510"},"reference-count":59,"publisher":"MDPI AG","issue":"8","license":[{"start":{"date-parts":[[2021,8,20]],"date-time":"2021-08-20T00:00:00Z","timestamp":1629417600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/100007013","name":"F. Hoffmann-La Roche","doi-asserted-by":"publisher","award":["EPBA2597097-A46"],"award-info":[{"award-number":["EPBA2597097-A46"]}],"id":[{"id":"10.13039\/100007013","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JPM"],"abstract":"<jats:p>There has been great progress in Huntington\u2019s disease (HD) research. Yet, effective treatments to halt disease before the onset of disabling symptoms are still unavailable. Scientific breakthroughs require an active and lasting commitment from families. However, they are traditionally less involved and heard in studies. Accordingly, the European Huntington Association (EHA) surveyed individuals at risk (HDRisk) and with premanifest HD (PreHD) to determine which factors affect their willingness to participate in research. Questions assessed research experience and knowledge, information sources, reasons for involvement and noninvolvement, and factors preventing and facilitating participation. The survey included 525 individuals, of which 68.8% never participated in studies and 38.6% reported limited research knowledge. Furthermore, 52% trusted patient organizations to get research information. Reasons for involvement were altruistic and more important than reasons for noninvolvement, which were related to negative emotions. Obstacles included time\/financial constraints and invasive procedures, while professional support was seen as a facilitator. PreHD individuals reported less obstacles to research participation than HDRisk individuals. Overall, a high motivation to participate in research was noted, despite limited experience and literacy. This motivation is influenced by subjective and objective factors and, importantly, by HD status. Patient organizations have a key role in fostering motivation through education and support.<\/jats:p>","DOI":"10.3390\/jpm11080815","type":"journal-article","created":{"date-parts":[[2021,8,20]],"date-time":"2021-08-20T08:44:45Z","timestamp":1629449085000},"page":"815","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":6,"title":["Perceptions about Research Participation among Individuals at Risk and Individuals with Premanifest Huntington\u2019s Disease: A Survey Conducted by the European Huntington Association"],"prefix":"10.3390","volume":"11","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-6075-6887","authenticated-orcid":false,"given":"Filipa","family":"J\u00falio","sequence":"first","affiliation":[{"name":"European Huntington Association, Spelonckvaart 30, 9180 Moerbeke (Waas), Belgium"},{"name":"Associa\u00e7\u00e3o Portuguesa dos Doentes de Huntington, Pra\u00e7a Ant\u00f3nio Bai\u00e3o, n\u00ba. 7 loja A, 1500-567 Lisboa, Portugal"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ruth","family":"Blanco","sequence":"additional","affiliation":[{"name":"European Huntington Association, Spelonckvaart 30, 9180 Moerbeke (Waas), Belgium"},{"name":"Asociaci\u00f3n Corea de Huntington Espa\u00f1ola, Avenida Cardenal Herrera Oria 80B, C.P. 28034 Madrid, Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jos\u00e8 Perez","family":"Casanova","sequence":"additional","affiliation":[{"name":"European Huntington Association, Spelonckvaart 30, 9180 Moerbeke (Waas), Belgium"},{"name":"Asociaci\u00f3n Corea de Huntington Espa\u00f1ola, Avenida Cardenal Herrera Oria 80B, C.P. 28034 Madrid, Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Barbara","family":"D\u2019Alessio","sequence":"additional","affiliation":[{"name":"European Huntington Association, Spelonckvaart 30, 9180 Moerbeke (Waas), Belgium"},{"name":"Fondazione Lega Italiana Ricerca Huntington, Via Varese 31, 00185 Rome, Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Beatrice","family":"De Schepper","sequence":"additional","affiliation":[{"name":"European Huntington Association, Spelonckvaart 30, 9180 Moerbeke (Waas), Belgium"},{"name":"Huntington Liga, Spelonckvaart 30, 9180 Moerbeke (Waas), Belgium"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Dina","family":"De Sousa","sequence":"additional","affiliation":[{"name":"European Huntington Association, Spelonckvaart 30, 9180 Moerbeke (Waas), Belgium"},{"name":"Scottish Huntington\u2019s Association, Business First, Linwood Point, Paisley PA1 2FB, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Paul","family":"De Sousa","sequence":"additional","affiliation":[{"name":"European Huntington Association, Spelonckvaart 30, 9180 Moerbeke (Waas), Belgium"},{"name":"Scottish Huntington\u2019s Association, Business First, Linwood Point, Paisley PA1 2FB, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Cristina","family":"Ferreira","sequence":"additional","affiliation":[{"name":"European Huntington Association, Spelonckvaart 30, 9180 Moerbeke (Waas), Belgium"},{"name":"Associa\u00e7\u00e3o Portuguesa dos Doentes de Huntington, Pra\u00e7a Ant\u00f3nio Bai\u00e3o, n\u00ba. 7 loja A, 1500-567 Lisboa, Portugal"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3948-8106","authenticated-orcid":false,"given":"Hans","family":"Gommans","sequence":"additional","affiliation":[{"name":"European Huntington Association, Spelonckvaart 30, 9180 Moerbeke (Waas), Belgium"},{"name":"Vereniging Van Huntington, Stationsplein 125, 3818 LE Amersfoort, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1892-1724","authenticated-orcid":false,"given":"Rob","family":"Haselberg","sequence":"additional","affiliation":[{"name":"European Huntington Association, Spelonckvaart 30, 9180 Moerbeke (Waas), Belgium"},{"name":"Vereniging Van Huntington, Stationsplein 125, 3818 LE Amersfoort, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Emilie","family":"Hermant","sequence":"additional","affiliation":[{"name":"European Huntington Association, Spelonckvaart 30, 9180 Moerbeke (Waas), Belgium"},{"name":"L\u2019Association Huntington France, 44, rue du Ch\u00e2teau des Rentiers, 75013 Paris, France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Danuta","family":"Lis","sequence":"additional","affiliation":[{"name":"European Huntington Association, Spelonckvaart 30, 9180 Moerbeke (Waas), Belgium"},{"name":"Polskie Stowarzyszenie Choroby Huntingtona, R\u0119kodzielnicza 17 A, 02-267 Warszawa, Poland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sabrina","family":"Maffi","sequence":"additional","affiliation":[{"name":"Huntington and Rare Diseases Unit, IRCCS Casa Sollievo della Sofferenza Research Hospital, San Giovanni Rotondo, 71013 Foggia, Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Svein Olaf","family":"Olsen","sequence":"additional","affiliation":[{"name":"European Huntington Association, Spelonckvaart 30, 9180 Moerbeke (Waas), Belgium"},{"name":"Landsforeningen for Huntingtons sykdom, LHS v\/Geir Viksund, Gr\u00f8nebrekka 32, 5306 Ask\u00f8y, Norway"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marios","family":"Papantoniou","sequence":"additional","affiliation":[{"name":"European Huntington Association, Spelonckvaart 30, 9180 Moerbeke (Waas), Belgium"},{"name":"Huntington\u2019s Disease Association of Cyprus, 89, Arch. Makarios III Avenue, Limassol 3020, Cyprus"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7397-1727","authenticated-orcid":false,"given":"Ferdinando","family":"Squitieri","sequence":"additional","affiliation":[{"name":"Huntington and Rare Diseases Unit, IRCCS Casa Sollievo della Sofferenza Research Hospital, San Giovanni Rotondo, 71013 Foggia, Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marina","family":"Tretyakova","sequence":"additional","affiliation":[{"name":"European Huntington Association, Spelonckvaart 30, 9180 Moerbeke (Waas), Belgium"},{"name":"Orphan People, C\u043fap\u0442a\u043ao\u0432c\u043aa\u044f y\u043b\u0438\u0446a, \u0434o\u043c 9, c\u0442poe\u043d\u0438e 1, 105 066 Moscow, Russia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Zaynab","family":"Umakhanova","sequence":"additional","affiliation":[{"name":"European Huntington Association, Spelonckvaart 30, 9180 Moerbeke (Waas), Belgium"},{"name":"Orphan People, C\u043fap\u0442a\u043ao\u0432c\u043aa\u044f y\u043b\u0438\u0446a, \u0434o\u043c 9, c\u0442poe\u043d\u0438e 1, 105 066 Moscow, Russia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Vladim\u00edr","family":"V\u00e1clav\u00edk","sequence":"additional","affiliation":[{"name":"European Huntington Association, Spelonckvaart 30, 9180 Moerbeke (Waas), Belgium"},{"name":"Spolo\u010dnost\u2019 Pre Pomoc Pri Huntingtonovej Chorobe, Gagarinova 979, 900 61 Gajary, Slovakia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michaela","family":"Winkelmann","sequence":"additional","affiliation":[{"name":"European Huntington Association, Spelonckvaart 30, 9180 Moerbeke (Waas), Belgium"},{"name":"Deutsche Huntington Hilfe E.V., Geschaefts und Beratungsstelle Falkstrasse 73-77, D 47058 Duisburg, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Astri","family":"Arnesen","sequence":"additional","affiliation":[{"name":"European Huntington Association, Spelonckvaart 30, 9180 Moerbeke (Waas), Belgium"},{"name":"Landsforeningen for Huntingtons sykdom, LHS v\/Geir Viksund, Gr\u00f8nebrekka 32, 5306 Ask\u00f8y, Norway"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"name":"on behalf of the European Huntington Association","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1968","published-online":{"date-parts":[[2021,8,20]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"1645","DOI":"10.1007\/s13311-020-00891-w","article-title":"Therapeutic Update on Huntington\u2019s Disease: Symptomatic Treatments and Emerging Disease-Modifying Therapies","volume":"17","author":"Dash","year":"2020","journal-title":"Neurotherapeutics"},{"key":"ref_2","doi-asserted-by":"crossref","first-page":"983","DOI":"10.1080\/14737175.2019.1631161","article-title":"Emerging therapies in Huntington\u2019s disease","volume":"19","author":"Bashir","year":"2019","journal-title":"Expert Rev. 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