Pediatric HIV/AIDS Cohort Study (PHACS)


PHACS logoPHACS began in 2005 to address two critical pediatric HIV research questions:

  • What is the long-term safety of fetal and infant exposure to antiretroviral therapy (ART)?
  • What are the effects of perinatally acquired HIV in adolescents?

PHACS is funded by the NICHD Maternal and Pediatric Infectious Disease Branch, National Institute on Alcohol Abuse and Alcoholism, National Institute of Allergy and Infectious Diseases, National Institute on Deafness and Other Communication Disorders,  National Institute of Dental and Craniofacial Research, National Institute on Drug Abuse, National Institute of Mental Health, National Institute of Neurological Disorders and Stroke, and the NIH Office of AIDS Research.

PHACS, funded through a Program Project Grant (P01), comprises 21 clinical sites across 12 states and Puerto Rico and 4 cores: data and resources, epidemiological and statistical methods, health education and community, and scientific administrative. To maximize efficiency, PHACS has data-sharing agreements with other studies and cross-enrolls participants with non-PHACS protocols.

The overall goals of this network are the following:

  • Understand how HIV and its treatment affect growth and development, sexual maturation, organ function, and socialization of pre-adolescents, adolescents, and young adults who acquired HIV perinatally
  • Acquire more definitive information on the long-term safety of ART when used during pregnancy and in newborns
  • Ensure a mechanism is in place to estimate the upper bounds of risk for children who were exposed to ART during maternal treatment to prevent perinatal HIV transmission
  • Continue the follow-up study of these populations

Topic Areas

PHACS conducts three major studies:

  • SMARTT evaluates the long-term safety of antiretroviral (ARV) medications taken during pregnancy among women living with HIV (WLHIV) and their children born without HIV. The PHACS SMARTT study is the largest study of pregnant WLHIV in the United States, and one of the only large studies in the world to follow children born to WLHIV beyond infancy.
  • AMP UP Series, which is examining the impact of HIV and treatment on pre-adolescents, adolescents, and youth 18 years of age and up. The study is designed to define the long-term outcomes of HIV and ART among young adults with perinatal HIV as they age into adulthood. Data are being collected with a combination of online surveys, clinical assessments, interviews, and chart abstraction.
  • TERBO BRAIN is a new study in PHACS poised to expand our understanding of the development and well-being of children, adolescents, and young adults affected by HIV. The Trajectories of Emotional Regulation and Behavior Outcomes and Related Brain Regions And Intrinsic Networks study will evaluate brain networks, cognitive well-being, and the mental and behavioral health of two groups of PHACS participants. 

These studies also examine the effects and risk factors related to HIV infection, antiretroviral use, and antiretroviral exposure in developing children and youth:

  • Neurodevelopmental, cognitive, academic, vocational, behavioral, and social outcomes
  • Impairment of hearing, language, and learning and other communication disorders
  • Substance use and mental health outcomes
  • Adherence to treatments and interventions
  • Growth, endocrinology, and bone development
  • Sexual maturation, gynecology, reproductive capacity, sexual health, and HIV risk behaviors
  • Nutrition, body composition, and tissue redistribution syndromes
  • Cardiovascular complications and disease risk
  • Genetics and epigenetics related to HIV infection, treatment, and antiretroviral exposure
  • Effects of maternal substance use on child outcomes
  • Oral health
  • Pulmonary complications
  • Renal complications

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