N73: The Danish HNPCC-Register From 1991 To 2018

I. Bernstein1, L. Lindberg2, L. Smith-Hansen2, L. Sunde3, 4

1 – Surgical Gastroenterology dept., Aalborg University Hospital, Denmark. 2 – The Danish HNPCC Register, Clinical Research Centre, Copenhagen University Hospital, Hvidovre, Denmark. 3 -Department of Clinical Genetics, Aarhus University Hospital, Aarhus, Denmark. 4 – Department of Biomedicine, Aarhus University, Aarhus, Denmark.

 

Aim: Presenting the story of The Danish HNPCC-register and methods  used for datacollection

Method: The Danish HNPCC register was established in 1991 as a private research register, later developing into a national database financed within the National Public Health care System. Epidemiological, clinical, and genomic data generated all over the country on 6.297 CRC families hereof 443 Lynch families are registered.

Initially paper-based reports were sent to and typed into the database. Later a model for electronic exchange of data between laboratories, departments and the register in an EC co-funded project to prevent cancer by optimizing screening, digitization of data transport and combining genotype-phenotype information, sufficiently usable and generic to be implemented in other countries were developed. As medical data are heterogeneous, focuses were on integration, development of classification systems and communication standards. Identified gaps and status of usability will be presented.

Results: Data in the HNPCC register belongs to the financing Capital Region and the multidisciplinary scientific societies providing data. To achieve commitment and ownership representatives off all parties are invited into the Scientific Board and Steering Comity of the register, where rules for ownership and data delivery are decided.

Conclusion: The Danish HNPCC-register is national and comprehensive, and researchers can request data via the Scientific Board.

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