CIBER (Center for Biomedical Network Research; Centro de Investigación Biomédica En Red) is a public national consortium created in 2006 under the umbrella of the Spanish National Institute of Health Carlos III (ISCIII). This innovative research structure comprises 11 different specific areas dedicated to the main public health priorities in the National Health System. CIBERER, the thematic area of CIBER focused on rare diseases (RDs) currently consists of 75 research groups belonging to universities, research centers, and hospitals of the entire country. CIBERER's mission is to be a center prioritizing and favoring collaboration and cooperation between biomedical and clinical research groups, with special emphasis on the aspects of genetic, molecular, biochemical, and cellular research of RDs. This research is the basis for providing new tools for the diagnosis and therapy of low‐prevalence diseases, in line with the International Rare Diseases Research Consortium (IRDiRC) objectives, thus favoring translational research between the scientific environment of the laboratory and the clinical setting of health centers. In this article, we intend to review CIBERER's 15‐year journey and summarize the main results obtained in terms of internationalization, scientific production, contributions toward the discovery of new therapies and novel genes associated to diseases, cooperation with patients' associations and many other topics related to RD research.
Introduction: Biospecimen donation and banking from diverse populations are critical for translational cancer research. Yet, little is known about community members’ perceptions about biospecimen donation and banking. The objectives of this study are to develop instruments to examine perceptions of biospecimen donation and banking and evaluate the efficacy of biobanking educational materials. Methods: Guided by a community-based participatory research (CBPR) approach, the study consists of two phases. In phase I, an instrument named Biobanking Attitudes and Knowledge Survey (BANKS) was developed in collaboration with the Tampa Bay Community Cancer Network (TBCCN) Biobanking Community Advisory Board to assess participants’ knowledge about and attitudes towards biospecimen collection, intention to donate biospecimens to a biobank, as well as self-efficacy regarding biospecimen donation. BANKS development and validation consists of iterative processes, including content analysis of 12 focus groups (n=95) for item generation; cognitive interviews (n=12 community members) to assess item comprehension and language appropriateness; content validity analyses with biobanking experts (n=5) to evaluate item relevancy to the constructs of interest (Knowledge, Attitudes and Self-efficacy); pilot-testing with community members; and instrument translation into Spanish. In Phase II, a small randomized control trial will be conducted with 60 community members to assess the efficacy of biobanking educational materials in increasing knowledge, positive attitudes, self-efficacy, and intentions to donate biospecimens to a biobank. The study will compare a multimedia biobanking educational intervention developed by TBCCN, with the National Cancer Institute brochure titled Providing Your Tissue for Research: What You Need to Know (NCI brochure). BANKS data will be collected following study enrollment (baseline), and then participants will be randomly assigned to one of two intervention groups (TBCCN multimedia intervention or NCI brochure). Follow-up interviews using the BANKS will be conducted between 7 and 14 days after enrollment. Participants’ medical records will be reviewed to assess group differences in biospecimen donation consent rates. Results: Using a CBPR approach, the project has successfully developed and validated a culturally and linguistically appropriate instrument to assess community members’ knowledge, attitudes, intention, and self-efficacy related to biospecimen donation. The BANKS is comprised of 21 attitudes items, 17 knowledge items, 11 self-efficacy items, and 2 intention items. Phase II of the study is expected to provide preliminary data on the efficacy of a multimedia biobanking educational intervention in improving perceptions of biospecimen donation and biobanking. Conclusion: Using a CBPR approach, data collected during this study have yielded a culturally appropriate instrument to assess community members’ perceptions about biobanking, the BANKS. The next step in the study is to use the BANKS to evaluate a multimedia biobanking intervention in increasing knowledge, positive attitudes, self-efficacy, and intention to donate biospecimens to a biobank among racial/ethnically and linguistically diverse populations in Tampa Bay, Florida. Citation Information: Cancer Epidemiol Biomarkers Prev 2011;20(10 Suppl):B8.
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