Long-Term Effects of HIV Exposure and Infection in Children

NCT ID: NCT00006304

Last Updated: 2013-10-07

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Total Enrollment

4150 participants

Study Classification

OBSERVATIONAL

Study Completion Date

2002-05-31

Brief Summary

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As new drugs and vaccines are developed to prevent HIV disease progression and prolong survival of HIV infected patients, the short-term safety and effectiveness of these treatments are evaluated in research studies. However, the long-term effects, whether they are benefits or side effects, need to be studied as well. These long-term effects may have a greater impact on infants and children who are still growing and developing. The purpose of this study is to follow HIV-exposed and HIV infected infants, children, and adolescents who are seen at Pediatric AIDS Clinical Trials Group (PACTG) study sites. These patients will be observed for long-term benefits or any late harmful effects of medications or vaccines.

Detailed Description

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The potential long-term benefits, toxicities, and other adverse outcomes of new anti-HIV therapies cannot be assessed within the time frame of most clinical trials. There is a need to better assess both positive and negative late outcomes and late treatment effects in growing children. This prospective, longitudinal study will evaluate the effects and their impact on children.

Children in this study will include patients who are HIV infected, were exposed to HIV or anti-HIV drugs prior to or at the time of their birth, or children of patients followed at Pediatric AIDS Clinical Trial Group (PACTG) sites. Children will have a study visit every 3 months through the first year of life. After age 1, children who are HIV infected will continue to have study visits every 3 months, while children who are HIV uninfected will have study visits once a year. Study assessments will include complete physical exam, medical history, Tanner staging, neurologic exam, growth and quality of life assessments, and laboratory tests such as hematology, chemistries, and urinalysis. Not all assessments will be performed at each study visit. Patients will be followed until age 24.

Conditions

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HIV Infections HIV Seronegativity

Keywords

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Acquired Immunodeficiency Syndrome AIDS-Related Complex

Eligibility Criteria

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Inclusion Criteria

* Age 21 or younger (consent of parent or guardian required if under 18).
* Meet 1 of the following 3 requirements: 1) enrolled in a previous version of this study; 2) perinatally exposed to HIV, HIV vaccines, or antiretroviral treatment (must enroll before first birthday); 3) HIV infected infants, children, and adolescents (and their offspring) followed at PACTG sites.

Exclusion Criteria

* Unable to adhere to study visit schedules.
Minimum Eligible Age

24 Hours

Maximum Eligible Age

21 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

Yes

Sponsors

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Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)

NIH

Sponsor Role collaborator

National Institute of Allergy and Infectious Diseases (NIAID)

NIH

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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James Oleske

Role: STUDY_CHAIR

Michael Brady

Role: STUDY_CHAIR

Wayne Dankner

Role: STUDY_CHAIR

Locations

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Univ of Alabama at Birmingham - Pediatric

Birmingham, Alabama, United States

Site Status

Univ of South Alabama

Mobile, Alabama, United States

Site Status

Phoenix Childrens Hosp

Phoenix, Arizona, United States

Site Status

UCSD Med Ctr / Pediatrics / Clinical Sciences

La Jolla, California, United States

Site Status

Long Beach Memorial (Pediatric)

Long Beach, California, United States

Site Status

Children's Hosp of Los Angeles/UCLA Med Ctr

Los Angeles, California, United States

Site Status

Los Angeles County - USC Med Ctr

Los Angeles, California, United States

Site Status

Cedars Sinai / UCLA Med Ctr

Los Angeles, California, United States

Site Status

UCLA Med Ctr / Pediatric

Los Angeles, California, United States

Site Status

UCLA Med Ctr / Pediatrics

Los Angeles, California, United States

Site Status

UCLA Med Ctr

Los Angeles, California, United States

Site Status

Children's Hosp of Oakland

Oakland, California, United States

Site Status

San Francisco Gen Hosp

San Francisco, California, United States

Site Status

UCSF / Moffitt Hosp - Pediatric

San Francisco, California, United States

Site Status

Connecticut Children's Med Ctr

Farmington, Connecticut, United States

Site Status

Univ of Connecticut / Farmington

Farmington, Connecticut, United States

Site Status

Yale Univ Med School

New Haven, Connecticut, United States

Site Status

Children's Hosp of Washington DC

Washington D.C., District of Columbia, United States

Site Status

Howard Univ. Washington DC NICHD CRS

Washington D.C., District of Columbia, United States

Site Status

North Broward Hosp District

Fort Lauderdale, Florida, United States

Site Status

Univ of Florida Gainesville

Gainesville, Florida, United States

Site Status

Univ of Florida Health Science Ctr / Pediatrics

Jacksonville, Florida, United States

Site Status

Univ of Miami / Jackson Memorial Hosp

Miami, Florida, United States

Site Status

Univ of Miami (Pediatric)

Miami, Florida, United States

Site Status

Sacred Heart Children's Hosp / CMS of Florida

Pensacola, Florida, United States

Site Status

Palm Beach County Health Dept

Riviera Beach, Florida, United States

Site Status

Univ of South Florida

St. Petersburg, Florida, United States

Site Status

Emory Univ Hosp / Pediatrics

Atlanta, Georgia, United States

Site Status

Med College of Georgia

Augusta, Georgia, United States

Site Status

The Med Ctr Inc

Columbus, Georgia, United States

Site Status

Mt Sinai Hosp Med Ctr / Dept of Pediatrics

Chicago, Illinois, United States

Site Status

Cook County Hosp

Chicago, Illinois, United States

Site Status

Univ of Illinois College of Medicine / Pediatrics

Chicago, Illinois, United States

Site Status

Chicago Children's Memorial Hosp

Chicago, Illinois, United States

Site Status

Univ of Chicago Children's Hosp

Chicago, Illinois, United States

Site Status

Children's Hospital of New Orleans

New Orleans, Louisiana, United States

Site Status

Tulane Univ / Charity Hosp of New Orleans

New Orleans, Louisiana, United States

Site Status

Earl K Long Early Intervention Clinic

New Orleans, Louisiana, United States

Site Status

Univ Hosp

New Orleans, Louisiana, United States

Site Status

Univ of Maryland at Baltimore / Univ Med Ctr

Baltimore, Maryland, United States

Site Status

Johns Hopkins Hosp - Pediatric

Baltimore, Maryland, United States

Site Status

Children's Hosp of Boston

Boston, Massachusetts, United States

Site Status

Childrens Hospital of Boston

Boston, Massachusetts, United States

Site Status

Boston City Hosp / Pediatrics

Boston, Massachusetts, United States

Site Status

Baystate Med Ctr of Springfield

Springfield, Massachusetts, United States

Site Status

Univ of Massachusetts Med School

Worcester, Massachusetts, United States

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Children's Hosp of Michigan

Detroit, Michigan, United States

Site Status

Univ of Mississippi Med Ctr

Jackson, Mississippi, United States

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St. Louis Children's Hosp

St Louis, Missouri, United States

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Cooper Hosp

Camden, New Jersey, United States

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Robert Wood Johnson AIDS Program

New Brunswick, New Jersey, United States

Site Status

UMDNJ - Robert Wood Johnson Med School / Pediatrics

New Brunswick, New Jersey, United States

Site Status

Univ of Medicine & Dentistry of New Jersey / Univ Hosp

Newark, New Jersey, United States

Site Status

Saint Joseph's Hosp and Med Ctr/UMDNJ - New Jersey Med Schl

Newark, New Jersey, United States

Site Status

Children's Hosp at Albany Med Ctr

Albany, New York, United States

Site Status

SUNY - Brooklyn

Brooklyn, New York, United States

Site Status

North Shore Univ Hosp

Great Neck, New York, United States

Site Status

Schneider Children's Hosp

New Hyde Park, New York, United States

Site Status

Beth Israel Med Ctr / Pediatrics

New York, New York, United States

Site Status

Bellevue Hosp / New York Univ Med Ctr

New York, New York, United States

Site Status

Cornell Univ Med College

New York, New York, United States

Site Status

New York Hosp - Cornell Med Ctr

New York, New York, United States

Site Status

Metropolitan Hosp Ctr

New York, New York, United States

Site Status

Mount Sinai Med Ctr / Pediatrics

New York, New York, United States

Site Status

Columbia Presbyterian Med Ctr

New York, New York, United States

Site Status

Incarnation Children's Ctr / Columbia Presbyterian Med Ctr

New York, New York, United States

Site Status

Harlem Hosp Ctr

New York, New York, United States

Site Status

Univ of Rochester Med Ctr

Rochester, New York, United States

Site Status

State Univ of New York at Stony Brook

Stony Brook, New York, United States

Site Status

SUNY Health Sciences Ctr at Syracuse / Pediatrics

Syracuse, New York, United States

Site Status

Bronx Lebanon Hosp Ctr

The Bronx, New York, United States

Site Status

Bronx Municipal Hosp Ctr/Jacobi Med Ctr

The Bronx, New York, United States

Site Status

Montefiore Med Ctr Adolescent AIDS Program

The Bronx, New York, United States

Site Status

Montefiore Medical / AECOM

The Bronx, New York, United States

Site Status

Duke Univ Med Ctr

Durham, North Carolina, United States

Site Status

Univ of North Carolina at Chapel Hill / Duke Univ Med Ctr

Durham, North Carolina, United States

Site Status

Columbus Children's Hosp

Columbus, Ohio, United States

Site Status

Oregon Health Sciences Univ

Portland, Oregon, United States

Site Status

Children's Hosp of Philadelphia

Philadelphia, Pennsylvania, United States

Site Status

Saint Christopher's Hosp for Children

Philadelphia, Pennsylvania, United States

Site Status

Rhode Island Hosp / Brown Univ

Providence, Rhode Island, United States

Site Status

Med Univ of South Carolina

Charleston, South Carolina, United States

Site Status

Saint Jude Children's Research Hosp of Memphis

Memphis, Tennessee, United States

Site Status

Vanderbilt Univ Med Ctr

Nashville, Tennessee, United States

Site Status

Children's Med Ctr of Dallas

Dallas, Texas, United States

Site Status

Texas Children's Hosp / Baylor Univ

Houston, Texas, United States

Site Status

Children's Hosp of the King's Daughters

Norfolk, Virginia, United States

Site Status

Med College of Virginia

Richmond, Virginia, United States

Site Status

Children's Hospital & Medical Center / Seattle ACTU

Seattle, Washington, United States

Site Status

Ramon Ruiz Arnau Univ Hosp / Pediatrics

Bayamón, , Puerto Rico

Site Status

Univ of Puerto Rico / Univ Children's Hosp AIDS

San Juan, , Puerto Rico

Site Status

San Juan City Hosp

San Juan, , Puerto Rico

Site Status

Countries

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United States Puerto Rico

References

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Brady MT, Clark C, Weedy C, Fowler M, Mofenson L, Oleske J. Disclosure of HIV diagnosis to children in ACTG clinical trials (ACTG 219). Int Conf AIDS. 1996 Jul 7-12;11(2):43 (abstract no WeD131)

Reference Type BACKGROUND

Gaughan DM, Mofeson LM, Hughes MD, Seage GR, Oleske JM. Avascular necrosis of the hip (Leggs-Calve-Perthes disease [LCPD]) in HIV-infected children in long-term follow-up: PACTG study 219. 8th Conf Retro and Opportun Infect. 2001 Feb 4-8 (abstract no 638)

Reference Type BACKGROUND

Buchacz K, Cervia JS, Lindsey JC, Hughes MD, Seage GR 3rd, Dankner WM, Oleske JM, Moye J. Impact of protease inhibitor-containing combination antiretroviral therapies on height and weight growth in HIV-infected children. Pediatrics. 2001 Oct;108(4):E72. doi: 10.1542/peds.108.4.e72.

Reference Type BACKGROUND
PMID: 11581480 (View on PubMed)

Culnane M, Fowler M, Lee SS, McSherry G, Brady M, O'Donnell K, Mofenson L, Gortmaker SL, Shapiro DE, Scott G, Jimenez E, Moore EC, Diaz C, Flynn PM, Cunningham B, Oleske J. Lack of long-term effects of in utero exposure to zidovudine among uninfected children born to HIV-infected women. Pediatric AIDS Clinical Trials Group Protocol 219/076 Teams. JAMA. 1999 Jan 13;281(2):151-7. doi: 10.1001/jama.281.2.151.

Reference Type RESULT
PMID: 9917118 (View on PubMed)

Gaughan DM, Mofenson LM, Hughes MD, Seage GR 3rd, Ciupak GL, Oleske JM; Pediatric AIDS Clinical Trials Group Protocol 219 Team. Osteonecrosis of the hip (Legg-Calve-Perthes disease) in human immunodeficiency virus-infected children. Pediatrics. 2002 May;109(5):E74-4. doi: 10.1542/peds.109.5.e74.

Reference Type RESULT
PMID: 11986480 (View on PubMed)

Hanson IC, Antonelli TA, Sperling RS, Oleske JM, Cooper E, Culnane M, Fowler MG, Kalish LA, Lee SS, McSherry G, Mofenson L, Shapiro DE. Lack of tumors in infants with perinatal HIV-1 exposure and fetal/neonatal exposure to zidovudine. J Acquir Immune Defic Syndr Hum Retrovirol. 1999 Apr 15;20(5):463-7. doi: 10.1097/00042560-199904150-00008.

Reference Type RESULT
PMID: 10225228 (View on PubMed)

Gaughan DM, Hughes MD, Seage GR 3rd, Selwyn PA, Carey VJ, Gortmaker SL, Oleske JM. The prevalence of pain in pediatric human immunodeficiency virus/acquired immunodeficiency syndrome as reported by participants in the Pediatric Late Outcomes Study (PACTG 219). Pediatrics. 2002 Jun;109(6):1144-52. doi: 10.1542/peds.109.6.1144.

Reference Type RESULT
PMID: 12042556 (View on PubMed)

Gortmaker SL, Hughes M, Cervia J, Brady M, Johnson GM, Seage GR 3rd, Song LY, Dankner WM, Oleske JM; Pediatric AIDS Clinical Trials Group Protocol 219 Team. Effect of combination therapy including protease inhibitors on mortality among children and adolescents infected with HIV-1. N Engl J Med. 2001 Nov 22;345(21):1522-8. doi: 10.1056/NEJMoa011157.

Reference Type RESULT
PMID: 11794218 (View on PubMed)

Howland LC, Gortmaker SL, Mofenson LM, Spino C, Gardner JD, Gorski H, Fowler MG, Oleske J. Effects of negative life events on immune suppression in children and youth infected with human immunodeficiency virus type 1. Pediatrics. 2000 Sep;106(3):540-6. doi: 10.1542/peds.106.3.540.

Reference Type RESULT
PMID: 10969100 (View on PubMed)

Nucleoside exposure in the children of HIV-infected women receiving antiretroviral drugs: absence of clear evidence for mitochondrial disease in children who died before 5 years of age in five United States cohorts. J Acquir Immune Defic Syndr. 2000 Nov 1;25(3):261-8. doi: 10.1097/00126334-200011010-00009.

Reference Type RESULT
PMID: 11115957 (View on PubMed)

Gaughan DM, Hughes MD, Oleske JM, Malee K, Gore CA, Nachman S; Pediatric AIDS Clinical Trials Group 219C Team. Psychiatric hospitalizations among children and youths with human immunodeficiency virus infection. Pediatrics. 2004 Jun;113(6):e544-51. doi: 10.1542/peds.113.6.e544.

Reference Type RESULT
PMID: 15173535 (View on PubMed)

Farley J, Gona P, Crain M, Cervia J, Oleske J, Seage G, Lindsey J; Pediatric AIDS Clinical Trials Group Study 219C Team. Prevalence of elevated cholesterol and associated risk factors among perinatally HIV-infected children (4-19 years old) in Pediatric AIDS Clinical Trials Group 219C. J Acquir Immune Defic Syndr. 2005 Apr 1;38(4):480-7. doi: 10.1097/01.qai.0000139397.30612.96.

Reference Type RESULT
PMID: 15764965 (View on PubMed)

Kest H, Brogly S, McSherry G, Dashefsky B, Oleske J, Seage GR 3rd. Malignancy in perinatally human immunodeficiency virus-infected children in the United States. Pediatr Infect Dis J. 2005 Mar;24(3):237-42. doi: 10.1097/01.inf.0000154324.59426.8d.

Reference Type RESULT
PMID: 15750460 (View on PubMed)

Brogly S, Williams P, Seage GR 3rd, Oleske JM, Van Dyke R, McIntosh K; PACTG 219C Team. Antiretroviral treatment in pediatric HIV infection in the United States: from clinical trials to clinical practice. JAMA. 2005 May 11;293(18):2213-20. doi: 10.1001/jama.293.18.2213.

Reference Type RESULT
PMID: 15886376 (View on PubMed)

Gona P, Van Dyke RB, Williams PL, Dankner WM, Chernoff MC, Nachman SA, Seage GR 3rd. Incidence of opportunistic and other infections in HIV-infected children in the HAART era. JAMA. 2006 Jul 19;296(3):292-300. doi: 10.1001/jama.296.3.292.

Reference Type RESULT
PMID: 16849662 (View on PubMed)

Williams PL, Storm D, Montepiedra G, Nichols S, Kammerer B, Sirois PA, Farley J, Malee K; PACTG 219C Team. Predictors of adherence to antiretroviral medications in children and adolescents with HIV infection. Pediatrics. 2006 Dec;118(6):e1745-57. doi: 10.1542/peds.2006-0493. Epub 2006 Nov 13.

Reference Type RESULT
PMID: 17101712 (View on PubMed)

Sirois PA, Montepiedra G, Kapetanovic S, Williams PL, Pearson DA, Malee K, Garvie PA, Kammerer BL, Nichols SL, Nozyce ML, Mintz M, Mitchell WG, Oleske JM; IMPAACT/PACTG 219C Team. Impact of medications prescribed for treatment of attention-deficit hyperactivity disorder on physical growth in children and adolescents with HIV. J Dev Behav Pediatr. 2009 Oct;30(5):403-12. doi: 10.1097/dbp.0b013e3181ba0cf6.

Reference Type RESULT
PMID: 19827220 (View on PubMed)

Levin MJ, Anderson JP, Seage GR 3rd, Williams PL; PACTG/IMPAACT 219C Team. Short-term and long-term effects of highly active antiretroviral therapy on the incidence of herpes zoster in HIV-infected children. J Acquir Immune Defic Syndr. 2009 Feb 1;50(2):182-91. doi: 10.1097/QAI.0b013e31819550a4.

Reference Type RESULT
PMID: 19131890 (View on PubMed)

Edathodu J, Halim MM, Dahham MB, Alrajhi AA. Mother-to-child transmission of HIV: experience at a referral hospital in Saudi Arabia. Ann Saudi Med. 2010 Jan-Feb;30(1):15-7. doi: 10.4103/0256-4947.59367.

Reference Type RESULT
PMID: 20103953 (View on PubMed)

Kapetanovic S, Aaron L, Montepiedra G, Sirois PA, Oleske JM, Malee K, Pearson DA, Nichols SL, Garvie PA, Farley J, Nozyce ML, Mintz M, Williams PL; Pediatric AIDS Clinical Trials. The use of second-generation antipsychotics and the changes in physical growth in children and adolescents with perinatally acquired HIV. AIDS Patient Care STDS. 2009 Nov;23(11):939-47. doi: 10.1089/apc.2009.0121.

Reference Type RESULT
PMID: 19827949 (View on PubMed)

Nachman SA, Chernoff M, Gona P, Van Dyke RB, Dankner WM, Seage GR 3rd, Oleske J, Williams PL; PACTG 219C Team. Incidence of noninfectious conditions in perinatally HIV-infected children and adolescents in the HAART era. Arch Pediatr Adolesc Med. 2009 Feb;163(2):164-71. doi: 10.1001/archpedi.163.2.164.

Reference Type RESULT
PMID: 19188649 (View on PubMed)

Williams PL, Van Dyke R, Eagle M, Smith D, Vincent C, Ciupak G, Oleske J, Seage GR 3rd; PACTG 219C Team. Association of site-specific and participant-specific factors with retention of children in a long-term pediatric HIV cohort study. Am J Epidemiol. 2008 Jun 1;167(11):1375-86. doi: 10.1093/aje/kwn072. Epub 2008 Apr 15.

Reference Type RESULT
PMID: 18413359 (View on PubMed)

Lyon ME, Williams PL, Woods ER, Hutton N, Butler AM, Sibinga E, Brady MT, Oleske JM. Do-not-resuscitate orders and/or hospice care, psychological health, and quality of life among children/adolescents with acquired immune deficiency syndrome. J Palliat Med. 2008 Apr;11(3):459-69. doi: 10.1089/jpm.2007.0148.

Reference Type RESULT
PMID: 18363489 (View on PubMed)

Lindsey JC, Malee KM, Brouwers P, Hughes MD; PACTG 219C Study Team. Neurodevelopmental functioning in HIV-infected infants and young children before and after the introduction of protease inhibitor-based highly active antiretroviral therapy. Pediatrics. 2007 Mar;119(3):e681-93. doi: 10.1542/peds.2006-1145. Epub 2007 Feb 12.

Reference Type RESULT
PMID: 17296781 (View on PubMed)

Seage GR 3rd, Buchacz K, Weinberg GA, Patel K, McIntosh K, Dankner WM. The Pediatric AIDS Severity Score (PASS): a multidimensional AIDS-severity adjustment for pediatric HIV infection. J Acquir Immune Defic Syndr. 2006 Dec 15;43(5):603-10. doi: 10.1097/01.qai.0000242453.20521.4f.

Reference Type RESULT
PMID: 17003692 (View on PubMed)

Williams PL, Marino M, Malee K, Brogly S, Hughes MD, Mofenson LM; PACTG 219C Team. Neurodevelopment and in utero antiretroviral exposure of HIV-exposed uninfected infants. Pediatrics. 2010 Feb;125(2):e250-60. doi: 10.1542/peds.2009-1112. Epub 2010 Jan 18.

Reference Type RESULT
PMID: 20083530 (View on PubMed)

Malee K, Williams PL, Montepiedra G, Nichols S, Sirois PA, Storm D, Farley J, Kammerer B; PACTG 219C Team. The role of cognitive functioning in medication adherence of children and adolescents with HIV infection. J Pediatr Psychol. 2009 Mar;34(2):164-75. doi: 10.1093/jpepsy/jsn068. Epub 2008 Jul 22.

Reference Type RESULT
PMID: 18647794 (View on PubMed)

Kapetanovic S, Aaron L, Williams PL, Farley J, Sirois PA, Garvie PA, Pearson DA, Oleske JM, Montepiedra G; The IMPAACT PACTG 219C Team. Relationships between the use of second-generation antipsychotics and changes in total cholesterol levels in children and adolescents perinatally infected with HIV. Neurobehav HIV Med. 2010 Aug;2010(2):39-48. doi: 10.2147/NBHIV.S12517.

Reference Type RESULT
PMID: 20865061 (View on PubMed)

Malee K, Williams P, Montepiedra G, McCabe M, Nichols S, Sirois PA, Storm D, Farley J, Kammerer B; PACTG 219C Team. Medication adherence in children and adolescents with HIV infection: associations with behavioral impairment. AIDS Patient Care STDS. 2011 Mar;25(3):191-200. doi: 10.1089/apc.2010.0181. Epub 2011 Feb 16.

Reference Type RESULT
PMID: 21323533 (View on PubMed)

Other Identifiers

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ACTG 219

Identifier Type: -

Identifier Source: secondary_id

PACTG 219C

Identifier Type: -

Identifier Source: secondary_id

11196

Identifier Type: REGISTRY

Identifier Source: secondary_id

ACTG 219C

Identifier Type: -

Identifier Source: org_study_id

NCT00000786

Identifier Type: -

Identifier Source: nct_alias