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5 Findings, Conclusions, and Recommendations
Pages 85-98

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From page 85...
... Scientific Value The committee responsible for the 2006 Disposition of the Air Force Health Study (hereafter, Disposition) report faced several uncertainties when they offered their observations regarding future research prospects for the AFHS data and biospecimens.
From page 86...
... The intent of the original Air Force Health Study was to determine whether exposure to the herbicides used during the Vietnam War was associated with adverse health outcomes. The Disposition report committee concluded, though, that its potential was much greater.
From page 87...
... The Disposition report did not speculate on the number and type of studies that might be proposed for and conducted with the assets, something that would in turn influence the amount of staff time required to support those studies. It instead simply noted that the amount of support required to fund a data management and access operation would depend on the demand for the assets.
From page 88...
... As the number of data requests was relatively small, the current model for distributing data to investigators was effective, but reevaluating this model may be necessary as the program moves forward and the number of investigators increases. However, additional value could be derived from the assets by rendering some records -- for example, personal medical records provided in hand-coded form by participants and images of X-rays stored in a proprietary software format -- into forms that would be usable by investigators, if demand for the information justified the investment.
From page 89...
... A cooperative research and development agreement governs the working relationship between the parties and includes training requirements for AFRL staff and requirements for periodic reports that catalog all accessions of the samples and any difficulties with the ultralow temperature freezers that hold them. Public Law 110-389 includes a provision that dedicates funding for their upkeep that is provided by the Department of Veterans Affairs (VA)
From page 90...
... However, it is premature to draw any conclu sions about the effectiveness of the pilot funding effort. The committee responsible for the Disposition report expressed the belief that pilot funding was "needed to establish the AFHS data assets as a resource for independent researchers" and that it would "stimulate prospective researchers to also seek external funding from other existing sources for further or more in-depth projects" (IOM, 2006, p.
From page 91...
... The committee that wrote the Disposition report presumed that a successful AFHS management program could be implemented but had no way of knowing whether it would work as they envisioned. That presumption has now been confirmed and the once-speculative potential of the program has been largely realized.
From page 92...
... While the committee is pleased that a broad spectrum of investigators is carrying out a variety of studies using the AFHS assets, it believes that the full potential of the assets has not come close to being realized. Despite the fact that the AFHS is among the few long-term longitudinal prospective studies that included longitudinally collected biospecimens, anecdotal experience suggests that few outside of the veterans health community are aware of it and its availability to outside researchers.
From page 93...
... Because the AFHS followed a cohort of active duty military personnel and veterans, and because the legislation that author­ized the transfer was initiated in the Senate Committee on Veterans' Affairs, it is not unreasonable that VA would be tasked with providing the initial support to maintain the assets and fund research using them. However, as the AFHS assets have also been found to be suitable for research addressing a broader variety of topics addressing the health of the general public, another entity may be equally appropriate to continue to provide all of the ongoing funding to support this resource.
From page 94...
... MFUA has much experience in storing, administering, and disseminating epidemiologic data, and maintaining the current structure of the assets management program is a viable option. However, joining forces with an organization that administers databases or funds research as its primary mission may allow for better promotion and dissemination of the AFHS data and biospecimens for new and original research than could be accomplished by the IOM alone.
From page 95...
... A thorough evaluation of partnering options would require discussions with candidate organizations to determine their willingness and c ­ apacity to take on curation of the AFHS data and a determination of the logistics and costs of preparing them for the relocation -- tasks that are beyond the scope of this committee. If Congress chooses to designate an alternate custodian to manage the AFHS data and biospecimens and to administer a research program, such a decision should be carefully considered and based on thorough comparison of the attributes and characteristics between the IOM and the alternatives it evaluates.5 Many i ­ssues would have to be resolved before such a transfer could take place.
From page 96...
... No matter who serves as custodian of the AFHS assets, a multiyear commitment to funding this organization is highly desirable as this would permit the long-term planning and sustaining of the infrastructure needed to conduct an e ­ ffective assets dissemination program. The committee believes that a full 5 years of sustained access is appropriate in order to allow enough time for prospective investigators to be made better aware of the assets, develop research hypotheses, propose studies, receive approval for analyzing them, obtain funding, perform work, and disseminate results through publication in peer-reviewed journals and other venues.
From page 97...
... 2006. Testing the viability of stored frozen serum samples from the Air Force Health Study using human multi-analyte profiles (MAP)
From page 98...
... 2006. Testing the viability of stored frozen serum samples from the Air Force Health Study using human multi-analyte profiles (MAP)


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