Cohort Profile: Generation Scotland: Scottish Family Health Study (GS:SFHS). The study, its participants and their potential for genetic research on health and illness.

GS:SFHS is a family-based genetic epidemiology study with DNA and socio-demographic and clinical data from about 24 000 volunteers across Scotland aged 18-98 years, from February 2006 to March 2011. Biological samples and anonymized data form a resource for research on the genetics of health, disease and quantitative traits of current and projected public health importance. Specific and important features of GS:SFHS include the family-based recruitment, with the intent of obtaining family groups; the breadth and depth of phenotype information, including detailed data on cognitive function, personality traits and mental health; consent and mechanisms for linkage of all data to comprehensive routine health-care records; and 'broad' consent from participants to use their data and samples for a wide range of medical research, including commercial research, and for re-contact for the potential collection of other data or samples, or for participation in related studies and the design and review of the protocol in parallel with in-depth sociological research on (potential) participants and users of the research outcomes. These features were designed to maximize the power of the resource to identify, replicate or control for genetic factors associated with a wide spectrum of illnesses and risk factors, both now and in the future.

European differences in cancer survival: report of an international symposium of general practitioners from three countries exploring primary and secondary care delay.

BACKGROUND: There are several potential delays in the cancer diagnostic pathway: patient delay, primary care delay and secondary care delay. People in the UK have poorer five-year survival from many cancers compared with people in European countries with similar healthcare systems. The reasons for this are not clear, although it has been postulated that UK patients may present with cancer at a later stage. We are conducting a study to investigate the feasibility of comparing diagnostic delays in different European countries. METHODS: (conduct of the symposium): A half-day, round-table symposium was convened with seven general practitioners (GPs) and single primary care researchers from Sweden (Malmö), the Netherlands (Maastricht) and Scotland (Aberdeen). In Session One the group had a broad-ranging discussion comparing and contrasting their different working contexts and how these might impact on the cancer diagnostic pathway. In Session Two the group considered two case studies from Scotland, applying their own local experience and the insights generated in Session One to identify common and divergent issues. When it had finished the facilitator drafted a detailed report of the symposium which was supported by reference to the individual participants' notes which had been collected at the end of the symposium. RESULTS: (consensus views reached): Sweden, the Netherlands and Scotland have strong traditions of primary care acting in a gate-keeping role. People with cancer in the three countries following a broadly similar cancer diagnostic pathway. In Sweden and the Netherlands GPs have direct unscreened access to a greater range of investigations than in Scotland. In Scotland there is a greater reliance on specialist guidelines than in the Netherlands or Sweden. Future research in the UK could explore the potential contribution of increased GP access to investigations and revised referral guidelines.