Biobanks for aging research - perceptions and choices among rheumatology outpatients.

Autor:	Cordeiro JV; NOVA National School of Public Health, Public Health Research Center; Comprehensive Health Research Center; Centro Interdisciplinar de Ciências Sociais (CICS.NOVA), Universidade NOVA de Lisboa., Lopes CA; CHRC - Comprehensive Health Research Center, CEDOC, NOVA Medical School; Rheumatology Department, CHLO, EPE - Centro Hospitalar de Lisboa Ocidental, Hospital de Egas Moniz, Lisboa., Faria PL; NOVA National School of Public Health, Public Health Research Center; Comprehensive Health Research Center; Centro Interdisciplinar de Ciências Sociais (CICS.NOVA), Universidade NOVA de Lisboa., Aguiar P; NOVA National School of Public Health, Public Health Research Center; Comprehensive Health Research Center, Universidade NOVA de Lisboa., Cercas MJ; NOVA Information Management School, Universidade NOVA de Lisboa., Victorino G; NOVA Information Management School, Universidade NOVA de Lisboa., Branco JC; CHRC - Comprehensive Health Research Center, CEDOC, NOVA Medical School; Rheumatology Department, CHLO, EPE - Centro Hospitalar de Lisboa Ocidental, Hospital de Egas Moniz, Lisboa., Fernandes A; Centro Interdisciplinar de Ciências Sociais (CICS.NOVA), Universidade NOVA de Lisboa., Santos FP; CHRC - Comprehensive Health Research Center, CEDOC, NOVA Medical School; Rheumatology Department, CHLO, EPE - Centro Hospitalar de Lisboa Ocidental, Hospital de Egas Moniz, Lisboa.
Jazyk:	angličtina
Zdroj:	Acta reumatologica portuguesa [Acta Reumatol Port] 2021 Jul-Sep; Vol. 46 (3), pp. 218-229.
Abstrakt:	Objective: Biobanks for research (BBR) have enormous value for research, including those specifically oriented to chronic diseases. Knowing public attitudes and perceptions is key to design and implement patient-centered BBR. We assessed patient awareness, perception and choices among rheumatology outpatients regarding aging biobanking activities. Methods: We conducted a cross-sectional survey of patients, aged 50 or older, attending an outpatient rheumatology tertiary department. Demographic data and perceptions about biobanking were collected and statistical analysis was performed. Results: 132 valid questionnaires were obtained (mean age: 63,4; 68,2% female; mean education years: 8,35). 61,7% of respondents did not know the specific term "biobank", 57,7% knew they could donate biological material for BBR, 89,9% agreed with these infrastructures and 88,3% would consider participation Those participants with more years of education were more knowledgeable and prone to biobank participation. Willingness to participate in BBR was mainly related (86,4%) to the advancement of scientific knowledge and not individual gain. Scientific research institutes were indicated as the most adequate institutions to manage BBR. Informed consent, anonymity and confidentiality ranked as top requisites for biobank participation. 61,3% of respondents expressed their agreement with aging biobanks, considering these as a sign of respect for specific problems of people of older ages such as higher disease burdens. Conclusion: Knowledge of biobanks was found to be limited. Participants were positive toward the setting up of biobanks in general and patient-centered aging biobanks in particular. Knowledge about biobanks and acceptance were higher among participants with higher education years.
Databáze:	MEDLINE
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