title: A clinic-based, comprehensive care model for studying late effects in long-term survivors of pediatric illnesses.
abstract: OBJECTIVE
  Long-term survivors of several childhood illnesses are at risk for multiple late effects of their illness or therapy, and children with documented toxic exposures may also experience long-term health consequences. Clinical studies of these effects are difficult to conduct. The Cardiovascular Status in Childhood Cancer Survivors Study is an established study that highlights the ability to perform comprehensive clinical investigations when patients are cared for in a formal, long-term follow-up clinic. This clinic model facilitates long-term retention and recruitment of patients, allowing comprehensive clinical studies of late effects of illness or exposures, in this case, of cardiovascular complications of cancer treatment during childhood.
  
  
  METHODS
  The study is funded through the National Institute of Health Office of Cancer Survivorship. Participants are recruited from the Long-Term Survivors Clinic at the University of Rochester. The clinic provides care for all survivors of childhood cancer in the region. The Long-Term Survivors Clinic provides medical care and psychosocial and educational support to patients and facilitates coordination of care. Patients remain in close contact with clinic staff for extended periods.
  
  
  RESULTS
  We recruited a representative sample of this long-term survivor population, with a wide range of ages, diagnoses, and time since diagnosis. Longitudinal collection of detailed clinical data will enable us to conduct cohort studies of late effects as well as case-control studies of toxic exposures.
  
  
  CONCLUSIONS
  The success of this study shows the advantages of formal programs for continued care of patients with chronic illnesses or treatment or toxic exposures. The Long-Term Survivors Clinic provides an excellent model for clinical care and research that is applicable to multiple pediatric and young adult populations.
authors.affiliation: Division of Pediatric Hematology/Oncology, Golisano Children's Hospital at Strong, Department of Pediatrics, University of Rochester School of Medicine and Dentistry, Rochester, New York 14642, USA. andrea_hinkle@urmc.rochester.edu
authors.forename: Andrea S
authors.initials: AS
authors.lastname: Hinkle
authors.forename: Cindy
authors.initials: C
authors.lastname: Proukou
authors.forename: Carol A
authors.initials: CA
authors.lastname: French
authors.forename: Amy M
authors.initials: AM
authors.lastname: Kozlowski
authors.forename: Louis S
authors.initials: LS
authors.lastname: Constine
authors.forename: Stuart R
authors.initials: SR
authors.lastname: Lipsitz
authors.forename: Tracie L
authors.initials: TL
authors.lastname: Miller
authors.forename: Steve E
authors.initials: SE
authors.lastname: Lipshultz
mesh_terms: D000293:Adolescent; D000970:Antineoplastic Agents / Q000009:adverse effects*; D002318:Cardiovascular Diseases / Q000139:chemically induced*; D002648:Child; D006801:Humans; D008137:Longitudinal Studies; D009369:Neoplasms / Q000188:drug therapy*; D012107:Research Design; D017741:Survivors
chemical_list: D000970:Antineoplastic Agents