The Pediatric HIV/AIDS Cohort Study (PHACS)

The Pediatric HIV/AIDS Cohort Study (PHACS) is an NIH-funded network which conducts multiple longitudinal observational cohort studies to investigate the long-term effects of HIV infection and ARV (antiretroviral) medications in children and young adults who were born with HIV or born exposed to, but uninfected with HIV. Three main studies are being conducted: The Surveillance Monitoring of ART Toxicities (SMARTT) study follows newborns, young children, adolescents, and young adults who are HIV-exposed but uninfected as they mature, while the Adolescent Master Protocol (AMP) and AMP Up studies follow children and young adults, respectively, who were HIV-infected at birth or HIV-exposed but uninfected. Numerous sub-studies are based on these two main studies to evaluate specific scientific areas of interest to children and youth with HIV.

The advances in treatment to prevent mother-to-child transmission of HIV have been groundbreaking. As a result, the number of new perinatally-infected children in the U.S. is now small. There have also been remarkable improvements in the treatment of infants, children and young adults who were infected with HIV at birth. This has ensured that in the U.S., many perinatally infected infants and children have become part of the first cohort to survive through adolescence and to approach adulthood.

Because of these advances, the number of adolescents and young adults living with HIV since birth worldwide is growing – both in resource-poor settings and settings with increasing levels of health care. In the U.S. alone, is estimated that there are approximately 10,000 perinatally-HIV-infected (PHIV+) adolescents/young adults,1  and globally, there is a cohort of adolescents and young adults who have been living with HIV infection since birth and are aging into young adulthood. The studies that PHACS supports investigate the impact of HIV infection and its treatment on the long term survival and outcomes among these young adults. PHACS’s research seeks to improve both quality of life and health care for young adults affected by HIV all over the world. The PHACS website can be found here:

The PHACS Team

The PHACS Data and Operations Center (DOC) is based at Harvard T. H. Chan School of Public Health (HSPH) and is led by Dr. George Seage. The DOC trains and monitors clinical sites in proper procedures for PHACS research, supports an active study-wide Community Advisory Board (CAB), and leads health education and communication efforts for PHACS. The DOC works closely with the Center for Biostatistics in AIDS Research (CBAR) under the PHACS DOC Statistical Director, Dr. Paige Williams, to provide operations, design, methodologic, and analytic expertise and support to the development of the PHACS protocols and to advance the PHACS research agenda.

PHACS has seven scientific working groups, each with a DOC Co-chair at HSPH as noted: HIV Complications (Co-Chair: Kunjal Patel), Cardiopulmonary (Co-Chair: Paige Williams), Metabolic, Growth and Nutrition (Co-Chair: Denise Jacobson), Neurodevelopmental and Neurological Disease (Co-Chair: Kathy Tassiopoulos), Adolescent, Risk Behaviors, HPB & Other STDs (Co-Chair: Kathy Tassiopoulos), Hearing, Language and Expressive Disorders (Co-Chair: TJ Yao), and Maternal Exposures, Mitochondrial Disease, Pharmacoepidemiology (Co-Chair: Deborah Kacanek).

The PHACS network is primarily funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), with co-funding from NIAID, NIMH, NIAAA, NIDCR, NINDS, NIDCD, and NIDA.

Selected PHACS Publications:

PHACS ARV Treatment and Complications in HIV-infected Children (PHACS AMP)

  • Van Dyke R, Patel K, Siberry G, Burchett S, Spector S, Chernoff M, Read J, Mofenson L, and Seage GR IIIfor the Pediatric HIV/AIDS Cohort Study. Antiretroviral treatment of US children with perinatally acquired HIV infection: temporal changes in therapy between 1991 and 2009 and predictors of immunologic and virologic outcomes. J Acquir Immune Defic Syndr 2011; 57(2):165-73. PMCID: PMC3125481.
  • Persaud D, Patel K, Karalius B, Rainwater-Lovett K, Ziemniak C, Ellis A, Chen YH, Richman D, Siberry GK, Van Dyke RB, Burchett S, Seage GR III, and Luzuriaga K, for the Pediatric HIV/AIDS Cohort Study. Influence of age at virologic control on peripheral blood human immunodeficiency virus reservoir size and serostatus in perinatally-infected adolescents. JAMA Pediatrics 2014; 168(12):1138-46. NIHMS#: 640235.

PHACS Cardiac, Metabolic and Growth Outcomes in Perinatally HIV-infected and Perinatally HIV-exposed Children

  • Jacobson D, Patel K, Siberry G, Van Dyke R, DiMeglio L, Geffner M, Chen J, McFarland E, Borkowsky W, Silio M, Fielding R, Siminski S, and Miller T for the Pediatric HIV/AIDS Cohort Study. Body fat distribution in perinatally HIV-infected and HIV-exposed but uninfected children in the era of highly active antiretroviral therapy: outcomes from the Pediatric HIV/AIDS Cohort Study. Am J Clin Nutr 2011; 94(6):1485-95. PMCID: PMC3252548.
  • Patel K, Wang J, Jacobson DL, Lipshultz SE, Landy DC, Geffner ME, DiMeglio LA, Seage GR III, Williams PL,Van Dyke RB, Siberry GK, Shearer WT, Young L, Scott GB, Wilkinson JD, Fisher SD, Starc TJ, and Miller TL for the Pediatric HIV/AIDS Cohort Study. Aggregate risk of cardiovascular disease among adolescents perinatally infected with the human immunodeficiency virus. Circulation 2014; 129(11):1204-12; PMCID: PMC3991841

PHACS Neurologic and Behavioral Outcomes in Perinatally HIV-infected and Perinatally HIV-exposed children (PHACS AMP)

  • Malee K, Tassiopoulos K, Huo Y, Siberry G, Williams P, Hazra R, Smith R, Allison S, Garvie P, Kammerer B, Kapetanovic S, Nichols S, Van Dyke R, Seage GR III, and Mellins C for the Pediatric HIV/AIDS Cohort Study. Mental health functioning among children and adolescents with perinatal HIV infection and perinatal HIV exposure. AIDS Care 2011; 23(12):1533-44. PMCID: PMC3062576.
  • Tassiopoulos K, Moscicki B, Mellins C, Kacanek D, Malee K, Allison S, Hazra R, Siberry G, Smith R, Paul M, Van Dyke R, and Seage GR III for the Pediatric HIV/AIDS Cohort Study. Sexual risk behavior among youth with perinatal HIV infection in the US: Predictors and implications for intervention development. Clin Infect Dis 2013; 56(2):283-90. PMCID: PMC3526253.

PHACS Assessing safety of in utero antiretroviral exposures in HIV-exposed infants (PHACS SMARTT)

  • Williams P, Seage GR III, Van Dyke R, Siberry G, Griner R, Tassiopoulos K, Yildirim C, Read J, Huo J, Hazra R, Jacobson D, Mofenson L, and Rich K for the Pediatric HIV/AIDS Cohort Study. A trigger-based design for evaluating the safety of in utero antiretroviral exposure in uninfected children of human immunodeficiency virus-infected mothers. Am J Epidemiol 2012; 175(9):950-61. PMCID: PMC3390009.
  • Williams PL, Crain M, Yildirim C, Hazra R, Van Dyke RB, Rich K, Read JS, Stuard E, Rathore M, Mendez HA, and Watts DH for the Pediatric HIV/AIDS Cohort Study. Congenital anomalies and in utero antiretroviral exposure in human immunodeficiency virus – exposed uninfected infants. JAMA Pediatrics 2014; 169(1):48-55. PMCID: PMC4286442.