Return of Individual Research Information in the Parkinson's Progression Markers Initiative.
Where this comes from
- Record sourced from PubMed, PMID 42057343.
- Also identified by DOI 10.1002/ana.78228.
- No licence information is recorded for this record.
- Because redistribution is not established, this page shows the abstract only. Follow the links below for the full text.
Abstract
The commitment of Parkinson's Progression Markers Initiative participants to longitudinal comprehensive clinical and biomarker research assessment is key to its success in acquiring high quality data. As the study has evolved, it has become clear that return of research information to participants should be prioritized to provide participants with their data as they have consistently and reasonably requested. The Parkinson's Progression Markers Initiative is committed to responsible sharing of individual research information with study participants. Two initiatives dedicated to results disclosure were simultaneously implemented: the Return of Research Information program and the Randomized Disclosure Assessment in the Parkinson's At-Risk Cohort clinical trial. These are pioneering studies on research information sharing. These initiatives empower participants and will provide valuable insights on the impact that disclosure may have on participants and study data. ANN NEUROL 2026.