The opening up of the Amsterdam cohort studies

The Amsterdam cohort study (ACS) on Human Immunodeficiency Virus (HIV) infection and AIDS among homosexual men started in 1984 and was expanded to include drug users in 1985. From the beginning, ACS has applied a multidisciplinary approach encompassing epidemiology, social science, virology, immunology and clinical medicine. Through 2002, over 550 articles and 62 PhD theses were completed based on the data of the ACS. Thus far, about 2100 homosexual men and 1630 (injecting) drug users have been included of whom approximately 600 homosexual men and 550 drug users are still in active follow-up. Every 3-6 months participants complete a standardized questionnaire to obtain medical, epidemiological and social scientific information and undergo a medical examination. In addition, they have blood drawn for virological and immunological tests and storage. Over time, questionnaires have changed and adapted to newer insights, which necessitates extensive data management before long-term trends can be studied. This especially hampers epidemiological and social scientific studies and has unfortunately lead to a relative underutilisation of the unique data set of the ACS. Recently, it has been made possible for Dutch researchers outside the ACS to submit requests for data and samples obtained within the ACS framework. However, because of the complex nature of the collected information over a long period of follow-up, laborious data management is necessary before such a request can be fulfilled. The overall aim of this proposal is to set up an easily accessible multidisciplinary data set that comprises longitudinally obtained epidemiological, social-scientific and biomedical information obtained from the participants of the ACS over the past 20 years of follow-up. Information over calendar time will be made comparable in order to be used by researchers and PhD students from various disciplines within ACS itself and others in The Netherlands and throughout the world. A multidisciplinary data set containing limited information will be made available for general use. The majority of the time needed to construct such a data set will be spend on making the tremendous amount of available epidemiological and social-scientific information comparable over 20 years of follow-up. Standard biomedical information has been used more often and will largely be comparable over time. The ACS web site (www.amsterdamcohortstudies.org) will be adapted to ensure a safe accessibility of information regarding the proposed data sets and the availability of material (serum and cells) from the repositories. New web interfaces will be designed, in order to provide researcher-friendly means to apply for the ACS data. Opening up of the data of the ACS will result in an exchange of scientific knowledge and enhance collaboration between diverse scientific disciplines and institutions. Because of the multidisciplinary nature of the contents of our proposal, we realize that this application concerns MAGW as well as ZonMW. We now apply at MAGW to comply with their pre-registration procedure but we intend to consult NWO before we apply in September.