Data stewardship in FTLD research: Investigator and research participant views.
Alzheimers Dement
; 20(4): 2886-2893, 2024 04.
Article
en En
| MEDLINE
| ID: mdl-38456576
ABSTRACT
INTRODUCTION:
Federal policies and guidelines have expanded the return of individual results to participants and expectations for data sharing between investigators and through repositories. Here, we report investigators' and study participants' views and experiences with data stewardship practices within frontotemporal lobal degeneration (FTLD) research, which reveal unique ethical challenges.METHODS:
Semi-structured interviews with (1) investigators conducting FTLD research that includes genetic data collection and/or analysis and (2) participants enrolled in a single site longitudinal FTLD study.RESULTS:
Analysis of the interviews identified three meta themes perspectives on data sharing, experiences with enrollment and participation, and data management and security as mechanisms for participant protections.DISCUSSION:
This study identified a set of preliminary gaps and needs regarding data stewardship within FTLD research. The results offer initial insights on ethical challenges to data stewardship aimed at informing future guidelines and policies.Palabras clave
Texto completo:
1
Colección:
01-internacional
Banco de datos:
MEDLINE
Asunto principal:
Degeneración Lobar Frontotemporal
Límite:
Humans
Idioma:
En
Revista:
Alzheimers Dement
Año:
2024
Tipo del documento:
Article
País de afiliación:
Estados Unidos