International epidemiologic Databases to Evaluate AIDS (IeDEA) is a research consortium which was set up by a group of international HIV/AIDS researchers with the goal of trying to answer emerging questions in HIV/AIDS and make comparisons using large cohort data for wider regional comparisons.
The IeDEA consortium attempts to create regional databases around the world so that data from a large number of patient cohorts are aggregated in a manner that will address epidemiological questions about the HIV epidemic that cannot be addressed through single cohorts.
In addition, this effort pursues issues that must use multiple patient cohorts in order to have broad generalizability throughout geographic, cultural and national groups. The funded world regions are East Africa, North America, Latin America, West Africa, Central Africa, Southern Africa and Australia.
Regional data centers are set-up for each of the funded regions in which data from all participating sites is pooled and harmonized.
De-identified ( without patient identifier information) from routine patient management medical records is transmitted and pooled to one large database at the regional data center from which the investigators in the consortium request data for analysis based on approved concept papers.
In August 2006, the IeDEA –East Africa regional consortium was initiated following a five year grant award from the National Institutes of Health (NIH), USA.
The IeDEA-East Africa consortium comprises of sites from Kenya (2 programs with a network of 20 clinics each), Uganda (4 sites) and Tanzania (4 sites), with the Principal Investigators based at Indiana University School of Medicine and is constituted for the following functions:
1. Identify data from HIV care and research networks in East Africa
2. Develop protocols to harmonize and merge data
3. Share data within East Africa regional consortium and collaborating researchers from the broader scientific community
4. Identify and pursue critical questions related to HIV/AIDS care, treatment and research that can be addressed with combined regional data.
In each of the three countries, Country Coordinators have been designated to play the roles of focal points for regulatory tracking, general coordination with participating clinics and as well be a conduit between these clinics and the Indiana University.
First funded August 2006, and the MUST ISS clinic joined at the same time. Was re-funded for another five years starting August 2011.
Over the past seven years, the East Africa IeDEA consortium laid the foundation for the research program and innovations for continuing research using observational databases.
The East Africa IeDEA has since conducted two data mergers (in 2008 and 2010) both to which the MUST clinic has contributed. The East Africa Regional Data Center (RDC) conducts periodic data quality and monitoring visits to offer guidance on quality to Investigators and Data Managers. Participating sites also implement data quality procedures independently. Throughout these efforts, the consortium has established a large, prospective cohort, generating data to support all consortium research efforts. The MUST ISS Clinic Data Manager has maintained communication with EA IeDEA regional Data Manager to respond to data querys from the recent data submission.
The East Africa IeDEA consortium has established data infrastructure, a large adult and pediatric cohort and a group of experienced Investigators, performed epidemiologic and statistical research in the region have collaborated with other regions in the IeDEA network.
The MUST ISS clinic is one of the participating sites in the EA IeDEA consortium since August 2006.
In the current year, the MUST ISS clinic IeDEA activities are funded through the following budgets; 1) Main IeDEA and the 2) NCI budget for KS diagnosis.
In addition, carried-forward funds will be available from two supplements of the previous year; 1) KS survival study supplement and 3) NIDA supplement for the Alcohol study. These carry-forwards are still going through approval process between the NIH and IU.