FSCC - sporedata/researchdesigneR GitHub Wiki

General description

The Family Studies of Childhood Cancer (FSCC) - Genealogy Database is a unique resource that compiles genealogical and medical data to investigate the familial and genetic aspects of childhood cancer. Estabished in September 2008, the FSCC Genealogy Database includes all new and prevalent cancer cases in southern Sweden, creating a comprehensive family history data bank.

In the approximately 1.8 million-person Southern Swedish Health Care Region, all children ≤18 years old with malignant diseases are referred to the Department of Pediatrics at Skåne University Hospital in Lund for treatment. The database supports studies on cancer etiology, genetic predisposition, and the identification of potential risk factors.

Benefit and categories

Benefits

• Cancer Etiology: Supports the investigation of familial patterns and the identification of potential genetic mutations associated with childhood cancer.
• Genetic Research: Provides detailed genealogical and genetic data, facilitating studies on hereditary cancer risk and genetic predisposition.
• Comparative Studies: Allows for comparisons with other familial and genetic datasets, enhancing global research on childhood cancer.
• Longitudinal Studies: Enables the study of cancer development over generations, contributing to a deeper understanding of cancer etiology.
• Public Health Interventions: Aids in the development of targeted screening and prevention programs for at-risk families.

Categories

• Health Records: Medical histories, cancer diagnoses, and treatment outcomes.
• Demographic Data: Age, gender, and other demographic variables.
• Genealogical Data: Detailed family trees, relationships, and family history of cancer.
• Genetic Information: Data on genetic variants, mutations, and hereditary markers.

Limitations

• Data Privacy: Stringent privacy regulations may limit data accessibility for some researchers.
• Data Completeness: Incomplete or missing data in family histories and medical records may affect research outcomes.
• Population Specificity: Findings may be specific to the Swedish population and not generalizable to other populations.

Related publications

• The Swedish Family-Cancer Database 2009: prospects for histology-specific and immigrant studies

Data access

Data from the Family Studies of Childhood Cancer - Genealogy Database is available to researchers upon request.

Detailed information on how to access the data can be found at Genealogy Database