Family studies of pediatric cancer - Family history data bank

In this unique Swedish study, which started in September 2008, all new and prevalent cancer cases in southern Sweden are included to create a family history data bank. All children ≤18 years of age with a malignant disease in the Southern Swedish Health Care Region (approximately 1.8 million inhabitants) are referred for care to the Department of Pediatrics at the Skåne University Hospital in Lund. Patients with a newly diagnosed malignancy and patients visiting the clinics for follow-up after completed treatment were invited to participate in the study. The eligibility criteria include (a) a diagnosis before 19 years of age with a malignancy following codes ICD 140 to 209 and (b) a diagnosis after 1970. Blood samples are collected and the patients and their parents are requested to complete a self-reported questionnaire, assessing name, date of birth, date of death, and history of cancer among first-, second- and third degree relatives. In addition a question about cancer in more distant relatives is included. Information regarding specific type of cancer and date of, or age at, diagnosis for each relative with a history of cancer is obtained. Purpose: The aim is to create a family history data bank with DNA of all new cases of pediatric cancer, to enable gene studies. Family history data bank, based on all new and prevalent cancer cases in the Southern Swedish Health Care Region. Until 2014 there were 650 children included in the study, and blood from 125 parents. The response rate is between 30-40%.