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[P3–079]: AN INTEGRATED APPROACH TO U.K. BRAIN BANKING ALLOWING RESEARCHERS TO SELECT TISSUE WITH PRECISION: MRC U.K. BRAIN BANK NETWORK, CSOLS TRACKING SYSTEM AND BRAINS FOR DEMENTIA RESEARCH
Author(s) -
Love Seth,
Cain Rich,
Palmer Laura,
Costello Helen,
Hayes Gillian M.,
Francis Paul T.,
Kehoe Patrick G.,
Chinner Amy
Publication year - 2017
Publication title -
alzheimer's and dementia
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 6.713
H-Index - 118
eISSN - 1552-5279
pISSN - 1552-5260
DOI - 10.1016/j.jalz.2017.06.1289
Subject(s) - dementia , tissue bank , sample (material) , tissue sample , medicine , computer science , database , pathology , disease , chemistry , chromatography , biomedical engineering
Results: The longitudinal and transitional nature of a readiness cohort creates the risk of the cohort and its concatenated trials becoming a ‘fish trap’ for its participants. With every step further into such a research project, it becomes more difficult for a participant to go back or retract from participation. Therefore, we recommend an adapted stagedconsent model for concatenated projects like EPAD, which are extended over time and multi-staged, and in which participants and data move from one stage to the next. This consent model feeds relevant information, bit by bit, along research participants’ journey, and asks informed consent at every moment in which important decisions need to be made by participants. Although informed consent is always given for a specific stage of the research project, information about the ‘totality of the project’ must always and explicitly be part of the informed consent process. Conclusions: It is critical to the success of readiness cohorts to carefully align ethical guidance for recruitment and informed consent. The ELSIwork package of EPAD recommends an adapted staged-consent model. This model may also be of value to other research collaborations in the process of developing and using readiness cohorts in Alzheimer’s disease research.