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F08 Factors influencing research participation in Huntington’s disease: clues from Southern and Eastern Europe
  1. Filipa Júlio1,2,
  2. Astri Arnesen1,3,
  3. Ruth Blanco1,4,
  4. Beatrice De Schepper1,5,
  5. Dina De Sousa1,6,
  6. Danuta Lis1,7,
  7. Svein Olaf Olsen1,3,
  8. Giorgos Papantoniou1,8,
  9. Saija Ristolainen-Kotimäki1,9,
  10. Marina Tretyakova1,10,
  11. Zaynab Umakhanova1,10,
  12. on behalf of the European Huntington Association (EHA)
  1. 1European Huntington Association, Belgium
  2. 2Associação Portuguesa dos Doentes de Huntington, Portugal
  3. 3Landsforeningen for Huntingtons sykdom, Norway
  4. 4Asociación Corea de Huntington Española, Spain
  5. 5Huntington Liga, Belgium
  6. 6Scottish Huntington’s Association, UK
  7. 7Polskie Stowarzyszenie Choroby Huntingtona, Poland
  8. 8Huntington’s Disease Association of Cyprus, Cyprus
  9. 9Suomen Huntington Yhdistys RY, Finland
  10. 10Orphan People, Russia

Abstract

Background One major obstacle to preventive clinical trials in Huntington’s disease (HD) is that persons at risk for HD (HDRisk) and persons with premanifest HD (PreHD) are often distant from clinical and research sites. Understanding their specific needs regarding trial participation is crucial to bring them closer to research.

Aims This work aimed to determine which factors affect the willingness of persons with HDRisk and with PreHD to participate in research and check for differences across European regions.

Methods The European Huntington Association created two online surveys to assess the factors influencing research participation in Spain and Russia. These countries were compared on questions about research experience and knowledge, sources of research information, reasons for getting involved and not getting involved in research, and factors preventing and facilitating participation.

Results 128 persons from Spain and 59 persons from Russia were heard. All showed high motivation to participate in trials, despite their limited research experience and knowledge. Importantly, fundamental differences were found in the reasons driving Spanish and Russian research participation. The Spanish engagement relies on altruistic reasons and is influenced by the relationship with professionals. The Russian engagement relies on individual benefits and is influenced by negative emotions and poor access to professionals.

Conclusions Distinct HD communities are highly motivated to participate in research, albeit their limitations. The uneven access to care and research across Europe seems to influence the factors underlying this motivation. Our findings highlight the relevance of country-specific interventions to encourage informed research participation in preclinical HD.

  • Premanifest HD
  • At Risk for HD
  • Research Participation
  • Survey
  • Country-Specific Needs

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