National Survey and Community Advisory Board Development for a Bipolar Disorder Biobank. (20th August 2015)

• Record Type: Journal Article
• Authors: Frye, Mark A; Doederlein, Allen; Koenig, Barbara; McElroy, Susan L; Nassan, Malik; Seymour, Lisa R; Biernacka, Joanna M; Daniels, Allen S
• Is Part Of: Bipolar disorders. Volume 17:Number 6(2015)
• Page Start: 598
• Page End: 605
• Publication Date: 2015-08-20
• Subjects: Manic-depressive illness -- Periodicals; Depression, Mental -- Periodicals; 616.895
• DOI: 10.1111/bdi.12322
• Languages: English
• ISSNs: 1398-5647

Abstract

<abstract abstract-type="main" id="bdi12322-abs-0001"> <title> <x xml:space="preserve">Abstract</x> </title> <sec id="bdi12322-sec-0001" sec-type="section"> <title>Objectives</title> <p>The aim of the present study was to engage a national advocacy group and local stakeholders for guidance in developing a bipolar disorder biobank through a web‐based survey and a community advisory board.</p> </sec> <sec id="bdi12322-sec-0002" sec-type="section"> <title>Methods</title> <p>The Depression and Bipolar Support Alliance and the Mayo Clinic Bipolar Biobank conducted a national web‐based survey inquiring about interest in participating in a biobank (i.e., giving DNA and clinical information). A community advisory board was convened to guide establishment of the biobank and identify key deliverables from the research project and for the community.</p> </sec> <sec id="bdi12322-sec-0003" sec-type="section"> <title>Results</title> <p>Among 385 survey respondents, funding source (87%), professional opinion (76%), mental health consumer opinion (79%), and return of research results (91%) were believed to be important for considering study participation. Significantly more patients were willing to participate in a biobank managed by a university or clinic (78.2%) than one managed by government (63.4%) or industry (58.2%; both p < 0.001). The nine‐member community advisory board expressed interest in research to help predict the likelihood of bipolar disorder developing in a child of an affected parent and which medications to avoid. The advisory board endorsed the use of a comprehension questionnaire to evaluate participants' understanding of the study (e.g., longevity of DNA specimens, right to remove samples, accessing medical records) as a means to strengthen the informed consent process.</p> </sec> <sec id="bdi12322-sec-0004" sec-type="section"> <title>Conclusions</title> <p>These national survey and community advisory data support the merit of establishing a biobank to enable studies of disease risk, provided that health records and research results are adequately protected. The goals of earlier diagnosis and individualized treatment of bipolar disorder were endorsed.</p> </sec> </abstract>