Philipp Mahlknecht, Simon Leiter, Corinne Horlings, Katarína Schwarzová, Iris Egner, Heike Stockner, Kathrin Marini, Christoph Theyer, Laura Zamarian, Atbin Djamshidian, Klaus Seppi, Fernanda Farfan, Alicia Garrido, Soumyabrata Ghosh, Rejko Krüger, Deborah McIntyre, Brit Mollenhauer, Alastair Noyce, Claire Pauly, Daniel F Pilco-Janeta, Kavita Rege, Venkata P Satagopam, Sebastian Schade, Cristina Simonet, Claudia Trenkwalder, Werner Poewe
{"title":"一项基于人口的研究中有关帕金森病风险披露的偏好。","authors":"Philipp Mahlknecht, Simon Leiter, Corinne Horlings, Katarína Schwarzová, Iris Egner, Heike Stockner, Kathrin Marini, Christoph Theyer, Laura Zamarian, Atbin Djamshidian, Klaus Seppi, Fernanda Farfan, Alicia Garrido, Soumyabrata Ghosh, Rejko Krüger, Deborah McIntyre, Brit Mollenhauer, Alastair Noyce, Claire Pauly, Daniel F Pilco-Janeta, Kavita Rege, Venkata P Satagopam, Sebastian Schade, Cristina Simonet, Claudia Trenkwalder, Werner Poewe","doi":"10.1002/mdc3.14264","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>Preferences for risk disclosure in population-based studies assessing Parkinson's disease (PD) risk have not been assessed so far.</p><p><strong>Objectives: </strong>To examine preferences for risk disclosure in a subset of the European Healthy Brain Aging (HeBA) multicenter study.</p><p><strong>Methods: </strong>After a remote PD risk assessment, a structured pilot-questionnaire on risk disclosure was first presented to participants (≥50 years, without neurodegenerative diseases) during in-person visits at the Innsbruck study site.</p><p><strong>Results: </strong>From the included 81 participants (63% females, median age 65 years), 79% expressed an unconditional desire to be informed about their PD risk. Confronted with a hypothetical scenario of a positive, specific PD test, most would try to live a healthier lifestyle. Regarding future placebo-controlled disease-modification trials, 66% stated they would probably or definitely participate.</p><p><strong>Conclusions: </strong>This pilot-study shows an open-minded view of participants towards disclosure of risk for future PD and a proactive attitude regarding dealing with one's risk.</p>","PeriodicalId":19029,"journal":{"name":"Movement Disorders Clinical Practice","volume":" ","pages":""},"PeriodicalIF":2.6000,"publicationDate":"2024-11-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Preferences regarding Disclosure of Risk for Parkinson's Disease in a Population-based Study.\",\"authors\":\"Philipp Mahlknecht, Simon Leiter, Corinne Horlings, Katarína Schwarzová, Iris Egner, Heike Stockner, Kathrin Marini, Christoph Theyer, Laura Zamarian, Atbin Djamshidian, Klaus Seppi, Fernanda Farfan, Alicia Garrido, Soumyabrata Ghosh, Rejko Krüger, Deborah McIntyre, Brit Mollenhauer, Alastair Noyce, Claire Pauly, Daniel F Pilco-Janeta, Kavita Rege, Venkata P Satagopam, Sebastian Schade, Cristina Simonet, Claudia Trenkwalder, Werner Poewe\",\"doi\":\"10.1002/mdc3.14264\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Background: </strong>Preferences for risk disclosure in population-based studies assessing Parkinson's disease (PD) risk have not been assessed so far.</p><p><strong>Objectives: </strong>To examine preferences for risk disclosure in a subset of the European Healthy Brain Aging (HeBA) multicenter study.</p><p><strong>Methods: </strong>After a remote PD risk assessment, a structured pilot-questionnaire on risk disclosure was first presented to participants (≥50 years, without neurodegenerative diseases) during in-person visits at the Innsbruck study site.</p><p><strong>Results: </strong>From the included 81 participants (63% females, median age 65 years), 79% expressed an unconditional desire to be informed about their PD risk. Confronted with a hypothetical scenario of a positive, specific PD test, most would try to live a healthier lifestyle. Regarding future placebo-controlled disease-modification trials, 66% stated they would probably or definitely participate.</p><p><strong>Conclusions: </strong>This pilot-study shows an open-minded view of participants towards disclosure of risk for future PD and a proactive attitude regarding dealing with one's risk.</p>\",\"PeriodicalId\":19029,\"journal\":{\"name\":\"Movement Disorders Clinical Practice\",\"volume\":\" \",\"pages\":\"\"},\"PeriodicalIF\":2.6000,\"publicationDate\":\"2024-11-18\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Movement Disorders Clinical Practice\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1002/mdc3.14264\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"CLINICAL NEUROLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Movement Disorders Clinical Practice","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1002/mdc3.14264","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"CLINICAL NEUROLOGY","Score":null,"Total":0}
Preferences regarding Disclosure of Risk for Parkinson's Disease in a Population-based Study.
Background: Preferences for risk disclosure in population-based studies assessing Parkinson's disease (PD) risk have not been assessed so far.
Objectives: To examine preferences for risk disclosure in a subset of the European Healthy Brain Aging (HeBA) multicenter study.
Methods: After a remote PD risk assessment, a structured pilot-questionnaire on risk disclosure was first presented to participants (≥50 years, without neurodegenerative diseases) during in-person visits at the Innsbruck study site.
Results: From the included 81 participants (63% females, median age 65 years), 79% expressed an unconditional desire to be informed about their PD risk. Confronted with a hypothetical scenario of a positive, specific PD test, most would try to live a healthier lifestyle. Regarding future placebo-controlled disease-modification trials, 66% stated they would probably or definitely participate.
Conclusions: This pilot-study shows an open-minded view of participants towards disclosure of risk for future PD and a proactive attitude regarding dealing with one's risk.
期刊介绍：
Movement Disorders Clinical Practice- is an online-only journal committed to publishing high quality peer reviewed articles related to clinical aspects of movement disorders which broadly include phenomenology (interesting case/case series/rarities), investigative (for e.g- genetics, imaging), translational (phenotype-genotype or other) and treatment aspects (clinical guidelines, diagnostic and treatment algorithms)
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