PT  - JOURNAL ARTICLE
AU  - Filipa Júlio
AU  - Ruth Blanco
AU  - Josè Perez Casanova
AU  - Barbara D’Alessio
AU  - Beatrice De Schepper
AU  - Dina De Sousa
AU  - Paul De Sousa
AU  - Cristina Ferreira
AU  - Hans Gommans
AU  - Rob Haselberg
AU  - Emilie Hermant
AU  - Danuta Lis
AU  - Sabrina Maffi
AU  - Svein Olaf Olsen
AU  - Marios Papantoniou
AU  - Ferdinando Squitieri
AU  - Marina Tretyakova
AU  - Zaynab Umakhanova
AU  - Vladimír Václavík
AU  - Michaela Winkelmann
AU  - Astri Arnesen
AU  - European Huntington Association
TI  - F12 Research participation: the view of persons at risk and persons with premanifest huntington’s disease
AID  - 10.1136/jnnp-2021-EHDN.55
DP  - 2021 Sep 01
TA  - Journal of Neurology, Neurosurgery & Psychiatry
PG  - A24--A24
VI  - 92
IP  - Suppl 1
4099  - http://jnnp.bmj.com/content/92/Suppl_1/A24.1.short
4100  - http://jnnp.bmj.com/content/92/Suppl_1/A24.1.full
SO  - J Neurol Neurosurg Psychiatry2021 Sep 01; 92
AB  - Background The development of effective therapies for Huntington’s disease (HD) requires an active, informed, and lasting commitment from HD families to research. Specifically, those traditionally less involved in studies should be heard and engaged in this process: persons at risk for HD (HDRisk) and persons with premanifest HD (PreHD).Aim To determine which factors affect the willingness of persons with HDrisk and PreHD to participate in research and check for differences related to HD status.Methods The European Huntington Association (EHA) created an online survey to assess the perceptions and experiences about research participation among persons with HDRisk and PreHD. The two groups were compared on their answers to questions about research experience and knowledge, sources of information about research, the importance of reasons for getting involved and not getting involved in studies, and factors preventing and facilitating study participation.Results/Outcome The survey was filled by 263 persons with HDRisk and 262 persons with PreHD. While the overall motivation of both groups to engage in research was high, respondents with PreHD reported significantly more research experience and better research knowledge than respondents with HDRisk. Respondents with HDRisk identified more barriers to research participation and the need for more support to engage in studies compared to respondents with PreHD.Conclusions Motivation to take part in studies is high, despite limited research experience and literacy. This motivation is strongly influenced by HD status. Our findings highlight the relevance of planning tailored interventions to better support an informed participation of specific HD groups in research.