Perceptions about Research Participation among Individuals at Risk and Individuals with Premanifest Huntington’s Disease: A Survey Conducted by the European Huntington Association
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...
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MDPI AG
2021-08-01
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| Series: | Journal of Personalized Medicine |
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| Online Access: | https://www.mdpi.com/2075-4426/11/8/815 |
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| author | Filipa Júlio Ruth Blanco Josè Perez 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 Olaf Olsen Marios Papantoniou Ferdinando Squitieri Marina Tretyakova Zaynab Umakhanova Vladimír Václavík Michaela Winkelmann Astri Arnesen on behalf of the European Huntington Association |
| author_facet | Filipa Júlio Ruth Blanco Josè Perez 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 Olaf Olsen Marios Papantoniou Ferdinando Squitieri Marina Tretyakova Zaynab Umakhanova Vladimír Václavík Michaela Winkelmann Astri Arnesen on behalf of the European Huntington Association |
| author_sort | Filipa Júlio |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-03-10T08:41:20Z |
| format | Article |
| id | doaj.art-ca2a4ece428244098b0d6f6d10357ddd |
| institution | Directory Open Access Journal |
| issn | 2075-4426 |
| language | English |
| last_indexed | 2024-03-10T08:41:20Z |
| publishDate | 2021-08-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Journal of Personalized Medicine |
| spelling | doaj.art-ca2a4ece428244098b0d6f6d10357ddd2023-11-22T08:19:48ZengMDPI AGJournal of Personalized Medicine2075-44262021-08-0111881510.3390/jpm11080815Perceptions about Research Participation among Individuals at Risk and Individuals with Premanifest Huntington’s Disease: A Survey Conducted by the European Huntington AssociationFilipa Júlio0Ruth Blanco1Josè Perez Casanova2Barbara D’Alessio3Beatrice De Schepper4Dina De Sousa5Paul De Sousa6Cristina Ferreira7Hans Gommans8Rob Haselberg9Emilie Hermant10Danuta Lis11Sabrina Maffi12Svein Olaf Olsen13Marios Papantoniou14Ferdinando Squitieri15Marina Tretyakova16Zaynab Umakhanova17Vladimír Václavík18Michaela Winkelmann19Astri Arnesen20on behalf of the European Huntington AssociationEuropean Huntington Association, Spelonckvaart 30, 9180 Moerbeke (Waas), BelgiumEuropean Huntington Association, Spelonckvaart 30, 9180 Moerbeke (Waas), BelgiumEuropean Huntington Association, Spelonckvaart 30, 9180 Moerbeke (Waas), BelgiumEuropean Huntington Association, Spelonckvaart 30, 9180 Moerbeke (Waas), BelgiumEuropean Huntington Association, Spelonckvaart 30, 9180 Moerbeke (Waas), BelgiumEuropean Huntington Association, Spelonckvaart 30, 9180 Moerbeke (Waas), BelgiumEuropean Huntington Association, Spelonckvaart 30, 9180 Moerbeke (Waas), BelgiumEuropean Huntington Association, Spelonckvaart 30, 9180 Moerbeke (Waas), BelgiumEuropean Huntington Association, Spelonckvaart 30, 9180 Moerbeke (Waas), BelgiumEuropean Huntington Association, Spelonckvaart 30, 9180 Moerbeke (Waas), BelgiumEuropean Huntington Association, Spelonckvaart 30, 9180 Moerbeke (Waas), BelgiumEuropean Huntington Association, Spelonckvaart 30, 9180 Moerbeke (Waas), BelgiumHuntington and Rare Diseases Unit, IRCCS Casa Sollievo della Sofferenza Research Hospital, San Giovanni Rotondo, 71013 Foggia, ItalyEuropean Huntington Association, Spelonckvaart 30, 9180 Moerbeke (Waas), BelgiumEuropean Huntington Association, Spelonckvaart 30, 9180 Moerbeke (Waas), BelgiumHuntington and Rare Diseases Unit, IRCCS Casa Sollievo della Sofferenza Research Hospital, San Giovanni Rotondo, 71013 Foggia, ItalyEuropean Huntington Association, Spelonckvaart 30, 9180 Moerbeke (Waas), BelgiumEuropean Huntington Association, Spelonckvaart 30, 9180 Moerbeke (Waas), BelgiumEuropean Huntington Association, Spelonckvaart 30, 9180 Moerbeke (Waas), BelgiumEuropean Huntington Association, Spelonckvaart 30, 9180 Moerbeke (Waas), BelgiumEuropean Huntington Association, Spelonckvaart 30, 9180 Moerbeke (Waas), BelgiumThere 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.https://www.mdpi.com/2075-4426/11/8/815Huntington’s diseasepremanifest Huntington’s diseaseclinical researchclinical trialssurvey |
| spellingShingle | Filipa Júlio Ruth Blanco Josè Perez 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 Olaf Olsen Marios Papantoniou Ferdinando Squitieri Marina Tretyakova Zaynab Umakhanova Vladimír Václavík Michaela Winkelmann Astri Arnesen 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 Huntington’s disease premanifest Huntington’s disease clinical research clinical trials survey |
| title | Perceptions about Research Participation among Individuals at Risk and Individuals with Premanifest Huntington’s Disease: A Survey Conducted by the European Huntington Association |
| title_full | Perceptions about Research Participation among Individuals at Risk and Individuals with Premanifest Huntington’s Disease: A Survey Conducted by the European Huntington Association |
| title_fullStr | Perceptions about Research Participation among Individuals at Risk and Individuals with Premanifest Huntington’s Disease: A Survey Conducted by the European Huntington Association |
| title_full_unstemmed | Perceptions about Research Participation among Individuals at Risk and Individuals with Premanifest Huntington’s Disease: A Survey Conducted by the European Huntington Association |
| title_short | Perceptions about Research Participation among Individuals at Risk and Individuals with Premanifest Huntington’s Disease: A Survey Conducted by the European Huntington Association |
| title_sort | perceptions about research participation among individuals at risk and individuals with premanifest huntington s disease a survey conducted by the european huntington association |
| topic | Huntington’s disease premanifest Huntington’s disease clinical research clinical trials survey |
| url | https://www.mdpi.com/2075-4426/11/8/815 |
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