International epidemiologic Databases to Evaluate AIDS Global Concepts

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www.IeDEA-hiv.org
ANRS Bordeaux Think Tank, June 30th - July 1st
2008 Carlie Williams Chief EB/BSP/DAIDS/NIAID/NIH
/DHHS cwilliams_at_niaid.nih.gov
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Purpose of this talk

• Describe
• What IeDEA is
• What IeDEA is not
• What IeDEA is doing
• What IeDEA might do

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IeDEA is HIV Databases defined by HIV relevant
regions

• Region 1 North America Canada
• United States

• Botswana
• Malawi
• Mozambique
• South Africa
• Zambia
• Zimbabwe

Region 8 Southern Africa
Region 8 West Africa

• Mali
• Nigeria
• Senegal

• Benin
• Cote d'Ivoire
• Gambia

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IeDEA is
- exposed infected ill therapy death

• Very large clinical databases
• Data collected by others - sometimes with
  assistance
• HIV positive patients in ARV standard of care
• Not lost to follow-up
• Curated data with harmonized definitions
• Quality
• Completeness
• Defined outcomes
• Harmonized

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IeDEA is not
- exposed infected ill therapy death

• Prevention data - except some PMTCT
• (Usually not) collected by observational
  epidemiologists
• Other drug (or CAM)/illicit exposure
• Adherence
• West Africa has added questionnaire
• Adverse events that require laboratory testing
• (Usually not) HIV negative patients with
  equivalent
• standard of care
• (Usually not) data from non-HIV clinical events
  (TB, cancer)
• Not a standing database

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What IeDEA is doingRegional and Global Research
Agenda

• Tackle questions that are relevant and unique to
  the larger dataset within the region or globally
• Entertain requests for data from within IeDEA and
  with outside investigators
• Submit concept with Principal Investigator
  sponsor to Executive Committee
• Designation of Regional Contacts
• Harmonized variable list created (that will be
  conserved)
• Harmonized dataset created
• Outstanding paper written

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Global Concepts to Date

• The use of zidovudine (AZT) containing
  antiretroviral regimens and its impact on the
  risk of anemia and survival in HIV-infected
  patients in developing countries
• Pharmacovigilance in research in
  resource-constrained settings
• Antiretroviral regimen durability and
  tolerability in African children and associated
  factors - A proposal of the KIDS-ART-LINC
  Collaboration
• Prediction of CD4 cell count and percentage
  slopes in patients with virological failure to
  first line antiretroviral combinations in
  resource limited settings
• Immunological Efficacy of ARVs Across Regions

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What else IeDEA is doing

• Extensive regional agenda
• Evaluating research by working groups
• Data harmonization
• Pediatrics
• Cancer
• Pharmacovigalence/Adverse Events
• Tuberculosis

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What IeDEA could do(money and staff willing)

• Study ARV response in adults and children
• Evaluate treatment approaches
• Measure ARV related AEs in different populations
• Evaluate other diseases and other clinics by
  linking to
• Cancer clinics
• Tuberculosis clinics
• Pregnancy care
• Enhance data collection to
• Improve risk behavior assessment
• Understand epidemiology of those waiting for care
• Create specimen repositories
• Genetics
• Virology
• Beyond standard of care testing