The Danish Lung Cancer Registry experience

Professor Erik Jakobsen provided some valuable insights into the Danish Lung Cancer Registry (DLCR) at the DEPM today.


Professor Jakobsen told the assembled group that the DLCR (initially established in 1992 as the Danish Lung Cancer Group), has been capturing vital data since 2001.  There are now more than 45,000 cases on file.  At its inception, Denmark had the lowest cancer survival rate of any of the Nordic countries.  By 2012, the overall one year survival rate had increased by 42.7%, two year survival rate by 24.3% and five year survival rate by 12%.

Data is collected from the National Patient Registry, the National Pathology Registry, the Cancer Registry and all of relevant medical departments, and fed into a centralised database management system for performance analysis.  Data is sent to the centralised government information system.  Reporting is carried out on an annual, quarterly and ad hoc basis.

Annual audits are performed, with commitment to undertake any new actions or improvement plans.

Importantly, and very pleasingly, the gap in consistency of treatment and survival between different regions has narrowed significantly, Prof Jakobsen said.

Another important standard that is now largely being met is the maximum 42 day turnaround  from referral to treatment for cancer patients, with over 90% of diagnosed patients commencing treatment within the 42 day turnaround time, and over 60% falling well within this timeframe.

Professor Jakobsen said that an important factor in the success of the DLCR was the Danish Government’s commitment to quality care, resulting in obligatory data reporting, leading to quality databases.  However, if research is to be undertaken it is still necessary in Denmark to apply for the necessary ethics approvals and to obtain patient consent.