INTRODUCTION: Huntington's disease (HD) is often on the margin of standard medical practice due to its low prevalence, the lack of causal treatment, and the typically long premanifest window prior to the onset of the symptoms, which contrasts with the long-lasting burden that the disease causes in affected families. METHODS: To capture these socio-psychological aspects of HD and map the experiences of affected individuals, persons at risk of HD, and caregivers, we created a questionnaire using a qualitative research approach. The questionnaire containing 16 questions was conducted online for a period of three months through patient associations in Slovakia and their infrastructures. RESULTS: In total, we received 30 responses. The survey results, in particular, indicate insufficient counselling by physicians with explicitly missing information about the possibility of preimplantation genetic diagnostic. There was also a necessity to improve comprehensive social and health care in the later stages of the disease, raise awareness of the disease in the general health community, and provide more information on ongoing clinical trials. CONCLUSION: The psychosocial effects, as well as the burden, can be mitigated by comprehensive genetic counselling as well as reproductive and financial guidelines and subsequent therapeutic programs to actively support patients, caregivers, children, and adolescents growing up in affected families, preferably with the help of local HD community association. LIMITATIONS: We have used online data collection to reach a wider HD community, but at the same time, we are aware that the quality of the data we would obtain through face-to-face interviews would be considerably better. Therefore, future studies need to be conducted to obtain more detailed information.

3rd Faculty of Medicine Charles University Prague 10000 Prague Czech Republic

Department of Neurology and Center of Clinical Neuroscience 1st Faculty of Medicine Charles University and General University Hospital Prague 12821 Prague Czech Republic

Department of Neurology University Hospital of Ulm 89081 Ulm Germany

Department of Neuropsychiatry kbo Isar Amper Klinikum 84416 Taufkirchen Germany

Department of Psychiatry Slovac Medical University 83303 Bratislava Slovakia

Landesklinikum Hainburg 2410 Hainburg an der Donau Austria

National Institute of Mental Health 25067 Klecany Czech Republic

Neuropsychiatric Department Psychiatric Hospital of Philipp Pinel in Pezinok 90201 Pezinok Slovakia

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