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three categories: data and databases, coordination/process, and considerations of study design needs.
DATA AND DATABASES
The VA Persian Gulf Health Registry is not a population database and is not administered uniformly, therefore, it cannot serve the purposes of research into the etiology or treatment of possible health problems. The Committee recognizes that certain tabulated descriptions of affected persons may legitimately be carried out for reasons other than the generation of scientific data. Specifically, there may be medical reasons for collecting information about patients with certain kinds of problems, especially diagnostic problems, particularly in medical settings where the information may be subjected to more intense scrutiny. An example is the establishment of the VA referral centers for Gulf War veterans. Since a limited number of veterans have been referred to these centers, and because the sample is self-selected, the Committee concludes that it is unlikely that productive scientific research (especially of an epidemiological nature) can ever be based on the data generated by the referral centers or the health registry as currently organized.
The VA Persian Gulf Health Registry should be limited and specific to gathering information to determine the types of conditions reported. The role of this registry should be clearly defined as a means for identifying and reporting illnesses among Gulf War veterans with concerns about their health. There should be efforts to implement quality control and standardization of data collected by the registry from other VA facilities. The VA registry data should not be promoted or described as a means to determine prevalence estimates or identify the etiology of a disease, but should be reviewed promptly for enrollment trends and potential sentinel events.
The VA should improve publicity regarding the existence of the Persian Gulf Health Registry, and encourage all concerned PGW veterans to be registered.
Where possible the referral centers, standardized protocol should be used in each VA facility.
The timeliness of data received from the VA Medical Centers (VAMC) to be entered into the PG Health Registry database needs to be improved.