IeDEA is an international research consortium established in 2005 to provide a rich resource for globally diverse HIV/AIDS data. Sites in various regions throughout the world collaborate to collect and define key variables, harmonize data, and implement methodology to effectively pool data as a cost-effective means of generating large data sets to address high-priority research questions and streamline HIV/AIDS research. The NICHD Maternal and Pediatric Infectious Disease Branch (MPIDB) (formerly the Pediatric, Adolescent, and Maternal AIDS [PAMA] Branch) has co-funded the IeDEA since 2006, providing support to promote the inclusion of patient data on infants, children, adolescents, and pregnant women.
The IeDEA collects HIV/AIDS data from seven international regional data centers: four in Africa and one each in the Asia-Pacific region, the Central/South America/Caribbean region, and North America. This data and resource pooling allows researchers to address unique and evolving research questions that individual cohorts are unable to answer.
The NICHD, the National Institute of Allergy and Infectious Diseases, and the National Cancer Institute provide funding to the IeDEA through a Cooperative Agreement mechanism (U01). The MPIDB funds pediatric and maternal data collection from the four African regions (East, West, South, and Central) and regional centers in the Asia-Pacific region and South America. As of 2014, these regions include over 63,000 HIV-infected children globally in their databases. The North America region is not funded for pediatric data collection because other Branch programs support extensive pediatric data collection there. The Pediatric IeDEA Working Group has been extremely productive, with 53 publications between 2010 and 2014, including several cross-regional and global analyses and publications. Data from IeDEA pediatric analyses were critical to inform the 2013 World Health Organization guidelines on pediatric treatment.
IeDEA data are collected for pediatric and maternal HIV/AIDS patients treated with antiretroviral therapies. Some topics of research using these data include (but are not limited to):
- Clinical, viral, and immune response of HIV-infected children to antiretroviral therapy and children's survival
- Risk factors for disease progression and mortality in HIV-infected children
- Infectious complications, such as tuberculosis and malaria, in HIV-infected children
- Types of antiretroviral regimens used in HIV-infected children in low-resource settings for initial therapy and subsequent treatments
- Development of drug resistance in children receiving antiretroviral therapy
- Complications of therapy among pediatric patients
- Options for monitoring pediatric responses to therapy in low-resource settings
- Psychosocial issues, such as type of caregivers for HIV-infected children, school issues, and aging of perinatally infected youth into adolescence in low-resource settings
- Regimens used for prevention of mother-to-child transmission and their effects on maternal and child health
- Issues related to program implementation for children, women, and prevention of mother-to-child transmission
In addition, the MPIDB staff is active in the IeDEA Pediatrics , Data Harmonization , and Tuberculosis working groups and the IeDEA Executive Committee .
Current Regions with NICHD Support for Pediatric/Maternal Databases
- Asia-Pacific Region: Dr. David Cooper and Dr. Matthew Law, University of New South Wales (Darlinghurst, NSW, Australia), co-principal investigators
- Caribbean, Central, and South America Region (CCASAnet): Dr. Catherine McGowan, Vanderbilt University (Nashville, TN), and Dr. Pedro Cahn, Buenos Aires University Medical School (Buenos Aires, Argentina), co-principal investigators
- Central Africa Region: Dr. Kathryn Anastos, Montefiore Medical Center, Albert Einstein College of Medicine (Bronx, NY), and Dr. Donald Hoover, Rutgers University (New Brunswick, NJ), co-principal investigators
- East Africa Region: Dr. Constantin Yiannoutsos and Dr. Kara Wools-Kaloustian, Indiana University School of Medicine (Indianapolis, IN), co-principal investigators
- Southern Africa Region: Dr. Matthias Egger, University of Bern (Switzerland), and Dr. Mary-Ann Davies, University of Cape Town (South Africa), co-principal investigators
- West Africa Region: Dr. Francois Dabis, Bordeaux School of Public Health (ISPED), INSERM U897 (Bordeaux, France), principal investigator
For more information on sites within each region, please select one of the links below to the IeDEA website.