Translating to the Community (T2C): a protocol paper describing the development of Canada’s first social epigenetic FASD biobank

Author:

Elias Brenda1,Hanlon-Dearman Ana2,Head Betty3,Hicks Geoffrey G.4

Affiliation:

1. Department of Community Health Sciences, Max Rady College of Medicine, University of Manitoba, Winnipeg, MB R3E 0W3, Canada.

2. Department of Paediatrics, Max Rady College of Medicine, University of Manitoba, Winnipeg, MB R3E 0W3, Canada; Manitoba FASD Centre/FASD Network, Winnipeg, MB R3E 3G1, Canada.

3. Cree Nation Tribal Health Centre, Star Program, The Pas, MB R9A 1M5, Canada.

4. Department of Biochemistry & Medical Genetics, Regenerative Medicine Program, Max Rady College of Medicine, University of Manitoba, Winnipeg, MB R3E 0W3, Canada.

Abstract

Translating to the Community (T2C) is a social biorepository designed to advance new diagnostic tools and realign community–clinical processes, with the aim to mitigate the short- and long-term impacts of fetal alcohol spectrum disorder (FASD) as well as prenatal alcohol exposure and its co-morbidities and behaviors. In this paper, we describe the evolution of this repository as a new translational partnership to advance a precision-medicine approach to FASD. Key to its evolution was a partnership between academic researchers, Indigenous communities, families, and a regional diagnostic clinic. We further describe the rationale for social biobanking, the type of banking, ethical engagement of families, communities, and clinics, their roles in repository design, governance, translation, and research activities, types of data collected from families, and how the study data are managed, reported, and accessed. The repository design includes biological samples, social-contextual health-survey data, and clinical data (which are linkable to administrative data) from community and clinical cohorts of diagnosed children, children prenatally exposed but not diagnosed, children suspected to have had a prenatal exposure, and related siblings, biological parents, and unrelated children and their parents. From these cohorts and families, potential studies drawing on this data will shed light on various risk factors, social and biological pathways, and service utilization issues, with the aim to implement primary and secondary prevention and intervention strategies.

Publisher

Canadian Science Publishing

Subject

Cell Biology,Molecular Biology,Biochemistry

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