Survival rates of cancer patients are now much longer than in the early 1990s thanks to progress made in cancer treatment. However, whether or not patients receive the best possible treatment available depends on the region and hospital where they are treated. “The clinical registration of cancer will help us to examine whether treating doctors adhere to medical associations’ treatment guidelines and how successful the therapies used are,” says Dr. Johannes Englert, head of the Clinical State Registry Office of the Baden-Württemberg Cancer Register.

“There may be a number of reasons why only 70 percent of all cancer patients in an administrative district or hospital catchment area undergo chemotherapy. Two reasons for not having this treatment may be advanced age or refusal to undergo therapy,” says Englert. Another reason could be that the communication between a hospital and the doctor carrying out chemotherapy is not as good as it could be. This may be why up to 30% of cancer sufferers do not necessarily receive the best possible treatment option available.

In 2011, the Baden-Württemberg government made it mandatory for all doctors to report every new case of cancer and provide information on the chosen therapy and disease progression to the Baden-Württemberg Cancer Register. The Baden-Württemberg Cancer Register records the number of cancer cases in the population along with detailed clinical cancer data. The Law on the Early Detection and Registration of Cancer came into force in 2013 and requires all German states to set up effective clinical cancer registers by the end of 2017. Since 2009, the epidemiological cancer registers in all German states have been reporting cancer-related data to the Robert Koch Institute which pools the data and delivers annual cancer statistics.

“The Baden-Württemberg Cancer Register stores the data of more than 90 per cent of all suspected cancer cases in Baden-Württemberg. Doctors report patient data via an online portal that operates through a software interface. The online messages are encrypted and transmitted to the German Statutory Pension Insurance (Deutsche Rentenversicherung) in Karlsruhe where staff in the Baden-Württemberg Cancer Register Trust Centre compare patient data with relocation, marriage and death data held by local registries and health departments and replace the patients’ names with control numbers.

The pseudonymised data are then sent electronically to Stuttgart, Baden-Württemberg’s capital, where Englert’s team in the Clinical State Registry Office in the Baden-Württembergische Krankenhausgesellschaft (Baden-Württemberg Hospital Association) analyses the medical data and evaluates the quality of cancer treatment. One of the issues that the analysis is specifically focusing on is identifying whether cancer treatment has followed valid guidelines. In addition, the Epidemiological Cancer Register at the German Cancer Research Center (DKFZ) uses these data to explore population-based information on the causes of cancer, survival analysis and other aspects.

In order to improve the quality of cancer care, the Clinical State Registry Office plans to hold regional quality conferences to discuss individual cancer type analyses with medical professionals. “We need to bring all doctors along the treatment chain together at one table,” says Englert. However, individual cancer patients can also benefit from the Baden-Württemberg Cancer Register as all doctors have access to reports their colleagues have submitted for a particular patient and can therefore adapt therapy to the patient’s individual needs. “In the case of a rare cancer for which no scientifically founded therapy recommendations are available, the treating doctor can find out how patients with similar tumour constellations have been treated and include this information in his or her therapy decision,” says Englert.

Health services researchers can also use the data pool of the cancer registers by sending a request to the Clinical State Registry Office. They can then use the data to analyse how quickly specific therapeutic procedures establish themselves or find out whether medicines are as effective and safe in everyday situations as they are in the defined situation of a clinical trial. Englert also envisages pooling cancer register data with personalised medicine data, for example a tumour’s genetic information. “We could then find out whether patients with a particular genetic modification in the tumour would benefit from a particular active ingredient and survive longer.”

These are still pipe dreams. “At the moment, the data only enable us to make limited statements,” says Englert. Although most doctors respect the obligation to report cancer data, Englert and his team continue to work hard to motivate them to include all data required. If a particular therapy is not mentioned in a doctor’s report, it is difficult to say whether the doctor has simply not used it and potentially not treated the patient as well as he or she could have done, or whether he or she has just failed to report it for whatever reason.

“The problem is that we had to set up the Baden-Württemberg Cancer Register according to the requirements of the new Cancer Register Law,” says Englert. For doctors, the requirement to use a new, Germany-wide uniform data format represented another obstacle. There are still problems with exchanging data between different state registers. However, Englert is quite optimistic: “I am sure that we will be able to meet the requirements of the new law by the end of 2017.” This would be a positive step in the fight against cancer.