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. 2024 Apr;20(4):2886-2893.
doi: 10.1002/alz.13719. Epub 2024 Mar 8.

Data stewardship in FTLD research: Investigator and research participant views

Jalayne J Arias  1   2 , Ana M Tyler  1 , Laura M Beskow  3 , Maria C Carillo  4 , Susan Dickinson  5 , Jill Goldman  6 , Mary A Majumder  7 , Michelle M Mello  8 , Heather M Snyder  4 , Jennifer S Yokoyama  1   9
Affiliations

Data stewardship in FTLD research: Investigator and research participant views

Jalayne J Arias et al. Alzheimers Dement. 2024 Apr.

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.

Keywords: data sharing; ethics; frontotemporal lobar degeneration; policy/law; research.

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Conflict of interest statement

Drs. Maria Carrillo and Heather Snyder are full‐time employees of the Alzheimer's Association. The remaining authors do not have conflicts to disclose. Author disclosures are available in the supporting information. Dr. Jennifer Yokoyama serves on the scientific advisory board for the Epstein Family Alzheimer's Research Collaboration.

References

    1. With Great Power Comes Great Responsibility – Quote Investigator. Accessed November 10, 2021. https://quoteinvestigator.com/2015/07/23/great‐power/
    1. National Academies of Sciences, Engineering, and Medicine, Health and Medicine Division, Board on Health Sciences Policy, Committee on the Return of Individual‐Specific Research Results Generated in Research Laboratories . Returning Individual Research Results to Participants: Guidance for a New Research Paradigm. In: Downey AS, Busta ER, Mancher M, Botkin JR, eds. National Academies Press; 2018. Accessed March 2, 2021. http://www.ncbi.nlm.nih.gov/books/NBK513173/ - PubMed
    1. NIH Genomic Data Sharing – Office of Science Policy . Accessed September 6, 2019. https://osp.od.nih.gov/scientific‐sharing/genomic‐data‐sharing/
    1. Bang J, Spina S, Miller BL. Frontotemporal dementia. The Lancet. 2015;386(10004):1672‐1682. doi:10.1016/S0140-6736(15)00461-4 - DOI - PMC - PubMed
    1. Onyike CU, Diehl‐Schmid J. The epidemiology of frontotemporal dementia. Int Rev Psychiatry Abingdon Engl. 2013;25(2):130‐137. doi:10.3109/09540261.2013.776523 - DOI - PMC - PubMed

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