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

Area of Science:

• Neurology
• Genetics
• Biomarkers

Background:

• Advances in biomarkers facilitate identifying individuals at risk for synucleinopathies.
• Ethical and practical challenges persist in communicating disease risk, especially across diverse cultural contexts.

Purpose of the Study:

• To assess attitudes toward future synucleinopathy risk disclosure in a large, non-Western registry.
• Included participants with isolated/idiopathic REM sleep behavior disorder (iRBD), Parkinson's disease (PD), and multiple system atrophy (MSA).

Main Methods:

• Nationwide survey conducted across 28 centers in Türkiye.
• Face-to-face questionnaires assessed attitudes toward risk disclosure, further testing, and clinical trial participation.
• Data analyzed using contingency tables and regression models, adhering to CROSS guidelines.

Main Results:

• Individuals with iRBD (88.3%) showed higher support for risk disclosure compared to PD (64.4%) and MSA (51.9%).
• Support for disclosure decreased slightly (3-8%) when disease-modifying treatments were absent.
• iRBD participants favored additional testing but were less inclined towards clinical trials (31.8%) than PD (45.3%) or MSA (48%).
• MSA patients reported greater psychological concerns; males favored disclosure and trials; younger, educated individuals preferred more testing.

Conclusions:

• Attitudes toward risk disclosure for synucleinopathies are heterogeneous across disease spectrums and demographics.
• Tailored, culturally sensitive disclosure strategies are crucial for effective clinical trial recruitment and patient care.