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Publications

Journal Article Ahead of print 1 citation

PubMed: 42487477 DOI: 10.1002/mdc3.70745

Attitudes in Patients With Prodromal and Overt α-Synucleinopathy Toward Risk Disclosure: A Nationwide Registry.

Mov Disord Clin Pract

Authors: Rezzak Yilmaz, Gülce Coşku Yılmaz Çakan, Yeşim Sücüllü Karadağ, Ülkü Dübüş Hoş, Ahmet Acarer, Vasfiye Kabeloğlu, Rıza Sonkaya, Gençer Genç, Aysegul Gunduz, Bilge Koçer, Hikmet Yılmaz, Sevda Erer, Murat Gultekin, Ayşe Bora Tokçaer, Esra Erkoç Ataoğlu, Bedia Samanci, Onur Serdar Gençler, Rasim Tuncel, Erdi Şahin, Tina Pak, Derya Selçuk Demirelli, Selen Yılmaz İbiş, Hilal Çöklü, Recep Baydemir, Rümeysa Unkun Altun, Gizem Güllü, Ömer Faruk Çiftçi, Kübra Mehel Metin, Bekir Enes Demiryürek, Gül Yalçın Çakmaklı, Başar Bilgiç, Okan Dogu, Feriha Özer, Murat Aksu, Deniz Tuncel Berktas, Utku Ogan Akyildiz, Derya Karadeniz, Burcu Gökçe Çokal, Aylin Bican Demir, Işıl Yazıcı Gençdal, Aysegul Seyma Saritas, Aysin Kısabay Ak, Ayşenur Şahin, Kezban Aslan-Kara, Sevda Ismailogullari, F Irsel Tezer, Haşmet Hanağası, M Cenk Akbostancı, Erik K St Louis, Gülçin Benbir Şenel

Affiliations

  • Department of Neurology, Ankara University School of Medicine, Ankara, Türkiye.
  • Istanbul Faculty of Medicine, Department of Neurology, Behavioral Neurology and Movement Disorders Unit, Istanbul University, Istanbul, Türkiye.
  • Department of Neurology, University of Health Sciences, Ankara Bilkent City Hospital, Ankara, Türkiye.
  • Department of Neurology, University of Health Sciences, Başakşehir Çam and Sakura City Hospital, Istanbul, Türkiye.
  • Department of Neurology, Ege University School of Medicine, Izmir, Türkiye.
  • Department of Neurology, Bakırköy Mazhar Osman Educational and Research Hospital, University of Health Sciences, Istanbul, Türkiye.
  • Gülhane Medicine Faculty, Department of Neurology, University of Health Sciences, Ankara, Türkiye.
  • Department of Neurology, Şişli Hamidiye Etfal Training and Research Hospital, University of Health Sciences, Istanbul, Türkiye.
  • Department of Neurology, Cerrahpaşa Medical Faculty, Istanbul University-Cerrahpaşa, Istanbul, Türkiye.
  • Department of Neurology, Ankara Etlik City Hospital, University of Health Sciences, Ankara, Türkiye.
  • Department of Neurology, Celal Bayar University School of Medicine, Manisa, Türkiye.
  • Department of Neurology, Uludağ University School of Medicine, Bursa, Türkiye.
  • Department of Neurology, Erciyes University School of Medicine, Kayseri, Türkiye.
  • Department of Neurology, Gazi University School of Medicine, Ankara, Türkiye.
  • Department of Neurology, Ankara Training and Research Hospital, University of Health Sciences, Ankara, Türkiye.
  • Department of Neurology, Faculty of Medicine, Istanbul Aydın University, Istanbul, Türkiye.
  • Department of Neurology, Hacettepe University School of Medicine, Ankara, Türkiye.
  • Department of Neurology, Mersin University School of Medicine, Mersin, Türkiye.
  • Department of Neurology, Koç University School of Medicine, Istanbul, Türkiye.
  • Department of Neurology, Acıbadem University, Istanbul, Türkiye.
  • Department of Neurology, Kahramanmaraş Sütçü Imam University Medical Faculty, Kahramanmaraş, Türkiye.
  • Department of Neurology, Aydın Adnan Menderes University Medical Faculty, Aydın, Türkiye.
  • Department of Neurology, Çukurova University School of Medicine, Adana, Türkiye.
  • Department of Neurology and Medicine, Mayo Clinic, Rochester, Minnesota, USA.

Abstract

BACKGROUND

Identification of individuals at increased risk for synucleinopathies is becoming more feasible with advances in biomarkers. However, the ethical and practical aspects of communicating disease risk remain unresolved, particularly across diagnostic groups and cultural contexts.

OBJECTIVES

We aimed to evaluate attitudes toward disclosure of future synucleinopathy risk among individuals with isolated/idiopathic REM sleep behavior disorder (iRBD), as well as in individuals who developed Parkinson's disease (PD), or multiple system atrophy (MSA), in a large non-Western registry.

METHODS

This nationwide survey study included participants from 28 movement disorders and sleep centers across Türkiye. Questionnaires assessing attitudes toward risk disclosure, additional testing, and clinical trial participation were administered face-to-face. Responses were analyzed using contingency tables and regression models. Results are reported following the Consensus-Based Checklist for Reporting of Survey Studies (CROSS) guideline.

RESULTS

Among 1385 participants (1039 PD, 107 MSA, 239 iRBD), individuals with iRBD showed the highest support for risk disclosure (88.3%), exceeding PD (64.4%) and MSA (51.9%). Approval declined modestly (3-8%) when framed within the absence of disease-modifying treatment. iRBD participants were more willing for additional testing but less willing to join clinical trials (31.8%) than PD (45.3%) or MSA (48%). MSA patients expressed the greatest concern about psychological impact. Male sex had more favorable views on disclosure and trial participation, while younger and better-educated participants favored additional testing.

CONCLUSIONS

Attitudes toward risk disclosure differ markedly across the synucleinopathy spectrum and demographic characteristics. Culturally informed and diagnosis-specific disclosure strategies will be essential for trial recruitment and patient-centered care.

MeSH

Registries, Research Design, Disclosure, Multiple System Atrophy, Sleep, Synucleinopathies