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Family studies of pediatric cancer - Family history data bank

SND-ID: ext0123-1.

Is part of collection at SND: Scania Metadatabase for Epidemiology (SME)

Access to data via

Contact

Creator/Principal investigator(s)

Håkan Olsson - Lund University, Faculty of Medicine, The Division of Oncology and Pathology

Research principal

Region Skåne - Faculty of Medicine, The Division of Oncology and Pathology

Description

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

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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%. Show less..
Method and outcome

Unit of analysis

Population

All new and prevalent cases of cancer among children in the Southern Swedish Health Care Region.

Time Method

Sampling procedure

Time period(s) investigated

2008-09 – Ongoing

Response rate/participation rate

ca 30- 40 %

Data format / data structure

Data collection

Data collection 1

  • Mode of collection: Self-administered questionnaire
  • Time period(s) for data collection: 2008-09–ongoing
  • Source of the data: Population group, Biological samples

Data collection 2

  • Mode of collection: Physical measurements and tests
  • Time period(s) for data collection: 2008-09–ongoing
  • Source of the data: Population group, Biological samples
Geographic coverage

Geographic spread

Geographic description: Södra Sverige

Administrative information

Responsible department/unit

Faculty of Medicine, The Division of Oncology and Pathology

Topic and keywords

Research area

Medical genetics (Standard för svensk indelning av forskningsämnen 2011)

Cancer and oncology (Standard för svensk indelning av forskningsämnen 2011)

Pediatrics (Standard för svensk indelning av forskningsämnen 2011)

Other clinical medicine (Standard för svensk indelning av forskningsämnen 2011)

Health (CESSDA Topic Classification)

Keywords

Genetic disorders, Dna, Genetics, Genetic markers, Paediatrics, Genealogy and heraldry, Scania, Epihealth, Epihealth_skåne, Blood sample, Pediatric cancer, Southern sweden

Publications

Magnusson S, Wiebe T, Kristoffersson U, Jernström H, Olsson H. Increased incidence of childhood, prostate and breast cancers in relatives of childhood cancer patients. Fam Cancer. 2012 Mar;11(1):145-55. doi: 10.1007/s10689-011-9493-3.

Contact for questions about the data