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Article

Perceptions about Research Participation among Individuals at Risk and Individuals with Premanifest Huntington’s Disease: A Survey Conducted by the European Huntington Association

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European Huntington Association, Spelonckvaart 30, 9180 Moerbeke (Waas), Belgium
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Associação Portuguesa dos Doentes de Huntington, Praça António Baião, nº. 7 loja A, 1500-567 Lisboa, Portugal
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Asociación Corea de Huntington Española, Avenida Cardenal Herrera Oria 80B, C.P. 28034 Madrid, Spain
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Fondazione Lega Italiana Ricerca Huntington, Via Varese 31, 00185 Rome, Italy
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Huntington Liga, Spelonckvaart 30, 9180 Moerbeke (Waas), Belgium
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Scottish Huntington’s Association, Business First, Linwood Point, Paisley PA1 2FB, UK
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Vereniging Van Huntington, Stationsplein 125, 3818 LE Amersfoort, The Netherlands
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L’Association Huntington France, 44, rue du Château des Rentiers, 75013 Paris, France
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Polskie Stowarzyszenie Choroby Huntingtona, Rękodzielnicza 17 A, 02-267 Warszawa, Poland
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Huntington and Rare Diseases Unit, IRCCS Casa Sollievo della Sofferenza Research Hospital, San Giovanni Rotondo, 71013 Foggia, Italy
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Landsforeningen for Huntingtons sykdom, LHS v/Geir Viksund, Grønebrekka 32, 5306 Askøy, Norway
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Huntington’s Disease Association of Cyprus, 89, Arch. Makarios III Avenue, Limassol 3020, Cyprus
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Orphan People, Cпapтaкoвcкaя yлицa, дoм 9, cтpoeниe 1, 105 066 Moscow, Russia
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Spoločnost’ Pre Pomoc Pri Huntingtonovej Chorobe, Gagarinova 979, 900 61 Gajary, Slovakia
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Deutsche Huntington Hilfe E.V., Geschaefts und Beratungsstelle Falkstrasse 73-77, D 47058 Duisburg, Germany
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Author to whom correspondence should be addressed.
Membership of the European Huntington Association is provided in the Acknowledgments.
Academic Editor: Ralf Braun
J. Pers. Med. 2021, 11(8), 815; https://doi.org/10.3390/jpm11080815
Received: 19 July 2021 / Revised: 13 August 2021 / Accepted: 18 August 2021 / Published: 20 August 2021
(This article belongs to the Special Issue The Many Faces of Huntington Disease)
There has been great progress in Huntington’s 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. View Full-Text
Keywords: Huntington’s disease; premanifest Huntington’s disease; clinical research; clinical trials; survey Huntington’s disease; premanifest Huntington’s disease; clinical research; clinical trials; survey
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MDPI and ACS Style

Júlio, F.; Blanco, R.; Casanova, J.P.; D’Alessio, B.; De Schepper, B.; De Sousa, D.; De Sousa, P.; Ferreira, C.; Gommans, H.; Haselberg, R.; Hermant, E.; Lis, D.; Maffi, S.; Olsen, S.O.; Papantoniou, M.; Squitieri, F.; Tretyakova, M.; Umakhanova, Z.; Václavík, V.; Winkelmann, M.; Arnesen, A.; on behalf of the European Huntington Association. Perceptions about Research Participation among Individuals at Risk and Individuals with Premanifest Huntington’s Disease: A Survey Conducted by the European Huntington Association. J. Pers. Med. 2021, 11, 815. https://doi.org/10.3390/jpm11080815

AMA Style

Júlio F, Blanco R, Casanova JP, D’Alessio B, De Schepper B, De Sousa D, De Sousa P, Ferreira C, Gommans H, Haselberg R, Hermant E, Lis D, Maffi S, Olsen SO, Papantoniou M, Squitieri F, Tretyakova M, Umakhanova Z, Václavík V, Winkelmann M, Arnesen A, on behalf of the European Huntington Association. Perceptions about Research Participation among Individuals at Risk and Individuals with Premanifest Huntington’s Disease: A Survey Conducted by the European Huntington Association. Journal of Personalized Medicine. 2021; 11(8):815. https://doi.org/10.3390/jpm11080815

Chicago/Turabian Style

Júlio, Filipa, Ruth Blanco, Josè P. Casanova, Barbara D’Alessio, Beatrice De Schepper, Dina De Sousa, Paul De Sousa, Cristina Ferreira, Hans Gommans, Rob Haselberg, Emilie Hermant, Danuta Lis, Sabrina Maffi, Svein O. Olsen, Marios Papantoniou, Ferdinando Squitieri, Marina Tretyakova, Zaynab Umakhanova, Vladimír Václavík, Michaela Winkelmann, Astri Arnesen, and on behalf of the European Huntington Association. 2021. "Perceptions about Research Participation among Individuals at Risk and Individuals with Premanifest Huntington’s Disease: A Survey Conducted by the European Huntington Association" Journal of Personalized Medicine 11, no. 8: 815. https://doi.org/10.3390/jpm11080815

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