Cancer registry

from Wikipedia, the free encyclopedia

A cancer registry is an organization for the systematic collection, storage, analysis, interpretation and publication of information on malignant neoplasms including lymphoma and leukemia (ICD-10 C00 – C99).

Differentiation according to the main objective

A distinction is made between epidemiological cancer registries and clinical cancer registries. In the best case scenario, clinical and epidemiological cancer registries work together so that the doctor only has to report to the clinical registry and this report is then forwarded to the epidemiological registry. In addition, as far as the law allows or stipulates it, data is exchanged between cancer registries, since a patient lives in the area of ​​one registry but can be treated in another area.

Epidemiological Cancer Registries

With epidemiological cancer registers, the cancer process, i.e. how often certain tumor diseases occur in a region, is observed. Time comparisons within a region or by comparing regions with each other are used to determine whether clusters of diseases occur somewhere (temporal and spatial monitoring). In the second step, targeted examinations must then be used to determine the causes of the accumulation, naturally with the aim of eliminating the cause as far as possible.

The importance of epidemiological research in the field of cancer was emphasized in January 2015 by the International Agency for Cancer Research (IARC) and the Robert Koch Institute . On the occasion of a publication by the cancer researchers Cristian Tomasetti and Bert Vogelstein , who attribute the majority of cancers to "bad luck", cancer researcher Christopher Wild from the IARC underlined the importance of epidemiological research. Thanks to epidemiological research, preventive measures have been taken and the incidence of lung cancer and bladder cancer has been reduced by reducing cigarette consumption in various countries .

Clinical cancer registries

Clinical cancer registries aim to improve the treatment of tumor diseases. To do this, relatively detailed data on the disease and therapy must first be collected. Improvements can be made using the following methods:

Comparison of therapies with each other
"Which therapy is best suited for which stage of the disease?"
Comparison of therapists among themselves
"Which therapist or which hospital achieves the better results with the same initial situation and the same therapy and why?" (So-called quality management )
Optimization of individual support
Reminder procedures ensure that therapies and follow-up examinations take place at the optimal times. Mutual information (register as an information hub) ensures that everyone involved in the care has the best information available.

In August 2016, a report by the umbrella association of statutory health insurance funds was published, which was drawn up by the consulting firm Prognos. There it was found that the development of the clinical cancer registries in Germany is making slow progress. Only in Hamburg , Mecklenburg-Western Pomerania and Saarland can it be achieved that the necessary databases will be available by the end of 2017. However, the report is based on information collected between December 2015 and February 2016 and does not necessarily reflect the current status.

history

At the turn of the twentieth century, attempts were made in several European countries to determine the number of new and existing cancer cases. This resulted in an attempt in Germany in 1900 to record all cancer patients who were under medical treatment by means of a questionnaire. Every doctor in Germany received a questionnaire to determine the status on October 15, 1900. Similar attempts were made between 1902 and 1908 in Denmark, Hungary, Iceland, the Netherlands, Portugal, Spain and Sweden and later in the USA. However, they all remained unsuccessful. The cooperation of the doctors proved to be inadequate.

The first population-based ("epidemiological") cancer registry was created in 1926 in Hamburg by the city physician. Three nurses visited the Hamburg hospitals and doctors at regular intervals and recorded the names of new cancer patients, which were stored centrally and compared with the death register once a week . While the Hamburg Register did not survive the National Socialist era , it found numerous imitators. In 1955 twenty such regional or national registries were counted, with the Danish cancer registry being the first nationwide mandatory registry that was established in 1942 and is still active today. Within a few years, all Scandinavian countries set up national cancer registries. In most countries, however, cancer registries have only been established for a few regions, such as the United States, Italy and Colombia. In addition, some cancer registries were set up only for children, for example in England and only in 1980 the nationwide German children's cancer registry . The cancer registries merged in 1966 to form the International Association of Cancer Registires .

Quality criteria

In order for epidemiological registers to deliver really good results, more than 90%, better 95%, of all new cases in the relevant register region must also be reported (so-called completeness ). So that clinical registries can deliver really good results, the diseases of the respective therapy facility (doctor / hospital) must be recorded in full. In addition, it is important to fully record the entire course of the disease (all relevant information) and not to stop after therapy.

Each population-based cancer registry receives the country's death certificates to compare the data . On the one hand, this is used to calculate survival times and to try to determine whether the cancer was the cause of death. A certain proportion of illnesses ( DCO proportion , death certificate only ) is known only through the death certificates, even after research. The problem with these cases is that the quality of the information is generally inadequate and the year in which the disease occurred cannot be determined, which makes the figures on disease rates more unreliable. The DCO share should therefore be as low as possible (below five percent).

In every newly created register, the DCO rate is naturally high at the beginning, as there are no reports of past cases. However, this proportion must decrease over the course of a few years. Since the nationwide cancer registration in some federal states is relatively new, it explains why long-standing cancer registries like the one in Saarland have lower DCO rates than others.

Importance of age standardization

The risk of developing certain types of cancer is strongly age-dependent. The number of diseases in a population ( “raw” incidence ) is thus dependent on the age distribution in the observed population. If one wants to follow developments over time (for example, “does the risk of a certain disease increase?”) Or want to make spatial comparisons (with regard to risk-prone and unpolluted areas, international comparisons), one has to normalize such effects through so-called age standardization. Common so-called reference populations for such comparisons are the Segi world population , FRG population 1987 or European standard populations.

Cancer registration in Germany

In Germany, epidemiological cancer registration is regulated by state laws. Although the world's first regional cancer registry was established in Hamburg as early as 1926, it was an exception for many years. Some other German cancer registries, such as those in the states of Berlin, Brandenburg, Mecklenburg-Western Pomerania, Saxony, Saxony-Anhalt and Thuringia, also have a longer tradition , which has been operated as the Common Cancer Register (GKR ) since 1992 as a continuation of the National Cancer Register of the GDR (1952/53) , or the Saarland Cancer Register (1967). These different regulations are the result of German federalism . In addition, there has been a nationwide children's cancer registry since 1980 , which is a combination of epidemiological and clinical cancer registries and is operated on a voluntary basis. The development of the individual registers has progressed to different degrees. Some country registers have already achieved a complete registration, some achieve this for individual diseases such as breast cancer, which is very important in terms of health policy. Overall, it will take a few more years before good quality figures can be expected nationwide, as the start-up time for new registers is considerable.

The center for cancer registry data at the Robert Koch Institute evaluates the data nationwide. The regular publication Cancer in Germany shows the situation for the last few years. The Society of Epidemiological Cancer Registers in Germany e. V. (GEKID) strives to achieve extensive methodological uniformity nationwide through content standards despite different state legal regulations. On May 29, 2009, the Bundestag passed the Federal Cancer Registry Data Act, which strengthens the Center for Cancer Registry Data and formally assigns the clinical cancer registries an official role in cancer registration.

Funding for nationwide clinical cancer registries

One basis for progress in the fight against cancer is the Cancer Early Detection and Register Act (KFRG), which provides that the federal states should set up clinical cancer registries across the board. The law passed by the German Bundestag came into force in April 2013.

The establishment of the clinical cancer registries is therefore the task of the federal states. The German Cancer Aid takes over the construction costs up to 90 percent. The aid organization is providing 7.2 million euros from the donations to further ensure patient care.

According to the KFRG, the statutory health insurances (GKV) promote the operation of clinical cancer registries with a flat rate per case that bears up to 90 percent of the estimated costs <§65c paragraph 2 and 4 SGB V <. The annual expenditure of the statutory health insurance for clinical cancer registries is estimated at 58.7 million euros.

The flat rate per case, which is based on the service date of the underlying report, was initially specified in the KFRG and amounted to EUR 119.00. The amount of the flat rate per case was adjusted annually and amounted to EUR 125.00 in 2016 and EUR 134.20 in 2019.

The private health insurances and the state aid funds have also agreed to a comparable contribution to the costs.

privacy

The pseudonyms of the data no longer corresponds, according to a resolution of the data protection officer of the federal and state governments to the prior art. However, this essentially applies to certain internal storage structures and does not mean that data is currently at risk from external attacks, for example, as the data is stored in networks that are completely separate from the Internet.

Objection options for those affected

The state laws are inconsistent with regard to the possibilities of contradicting the transmission and storage of identity data or diagnostic data as well as "making contact". While in North Rhine-Westphalia, for example, it is only possible to object to being "contacted", in Mecklenburg-Western Pomerania the person concerned can object to the reporting of his data. In this case, the deletion of data that has already been transmitted will also be initiated.

Austrian Cancer Registry

In Austria, the obligation to notify tumor diseases is regulated by the Cancer Statistics Act 1969 and the Cancer Statistics Ordinance 1978. Statistics Austria receives disease and death data from all around 270 notifiable hospitals. The federal states of Vorarlberg, Tyrol, Salzburg and Carinthia have their own nationwide cancer registries. The epidemiology of the incidence (new cases per calendar year) and mortality play a central role in health reporting on cancer . Statistics Austria publishes regularly on cancer incidence and cancer mortality in Austria; The current report is Cancer Diseases in Austria 2018.

Cancer registration in Switzerland

In Switzerland, the first cancer registries were established in Basel in 1969 and in Geneva in 1970 ; in 2014, 15 cantonal or cross-cantonal registers recorded cancer of around 94 percent of the Swiss population. In 2007, the National Institute for Cancer Epidemiology and Registration (NICER Foundation) was established. Its task is to compile and process the data from the individual registers and to publish reports. The national report “Cancer in Switzerland” is published jointly with the Federal Statistical Office (FSO). The first was published in 2011, the second in 2016. The FSO publishes the latest figures on its website every year.

In 2020, nationwide, complete and complete cancer registration was introduced throughout Switzerland. The Federal Council had a presentation to the October 2014 Federal Assembly adopted. On March 18, 2016, the Cancer Registration Act was passed by Parliament, which came into force on January 1, 2020. The National Institute for Cancer Epidemiology and Registration (NICER) has been mandated to perform the tasks of the National Cancer Registration Office.

See also

Web links

Laws

Individual evidence

  1. ↑ C. Tomasetti and B. Vogelstein (2015) Variation in cancer risk among tissues can be explained by the number of stem cell divisions . In: Science , 347: 78-81
  2. ↑ IARC press release of January 13, 2015: Most types of cancer not due to "bad luck" - IARC responds to scientific article claiming that environmental and lifestyle factors account for less than one third of cancers , accessed on March 25, 2015
  3. ↑ RKI, Center for Cancer Registry Data, as of January 21, 2015: Most cancers are not the result of "bad luck" ( memento of April 2, 2015 in the Internet Archive ), accessed on March 25, 2015
  4. ↑ Expert opinion on the current implementation status of the KFRG (PDF; 30kb). Final report by Prognos AG , Berlin, August 18, 2016.
  5. ↑ Isabel dos Santos Silva: Cancer Epidemiology: Principles and methods International Agency for Research on Cancer , Lyon, France 1999, ISBN 92-832-0405-0
  6. ↑ Robert Koch Institute, GEKID e. V. (Ed.): Krebs in Deutschland 2007/2008. Frequencies and trends. 8th edition, 2012, ISBN 978-3-89606-214-7
  7. ^ Robert Koch Institute and the Society of Epidemiological Cancer Registers in Germany eV (Ed.) Krebs in Deutschland 2011/2012 10th edition. Berlin, 2015. ISBN 978-3-89606-228-4
  8. ↑ Federal Law Gazette , April 8, 2013
  9. ↑ Gerd Nettekoven, chairman of the board of Deutsche Krebshilfe Bonn, October 10, 2015. http://www.krebshilfe.de/nc/startseite/aktuelle-themen/article/wichtige-impulse-fuer-die-krebsversorgung.html
  10. ^ Federal Health Minister Daniel Bahr , negotiation report of December 13, 2012, Berlin
  11. ↑ Cancer registry Rhineland-Palatinate: case flat rate overview. Rhineland-Palatinate Cancer Registry, March 22, 2018, accessed on October 13, 2019 .
  12. ↑ GKV umbrella organization: Circular 2018-642. In: circular. GKV Spizenverband, November 30, 2018, accessed on October 13, 2019 .
  13. ^ Resolution of the Conference of the Data Protection Commissioners of the Federation and the Länder on March 13, 2013
  14. ↑ Cancer Register Act - KRG NRW
  15. ↑ § 3 Paragraph 5 KrebsRegGMV
  16. ↑ 30 years of Vorarlberg cancer registry
  17. ↑ Tyrol tumor register
  18. ^ Salzburg tumor registry
  19. ↑ Cancer statistics (cancer registry)
  20. ↑ Austrian Cancer Register
  21. ↑ Austrian cause of death statistics
  22. ↑ http://www.statistik.at/web_de/services/publikationen/4/index.html?includePage=detailedView§ionName=Gesundheit&pubId=637
  23. ↑ a b page no longer available , search in web archives: Federal Office of Public Health Embassy on the Federal Law on the Registration of Cancer Diseases of October 29, 2014@1@ 2Template: Dead Link / www.bag.admin.ch
  24. ↑ Cancer in Switzerland 1983–2007
  25. ↑ nicer: Cancer in Switzerland ( Memento from December 11, 2018 in the Internet Archive )
  26. ↑ Federal Statistical Office: Swiss Cancer Report 2015 - Status and developments | Publication. July 11, 2016, accessed August 8, 2019 .
  27. ^ Cancer in Switzerland
  28. ↑ Published in the Federal Gazette No. 46 of November 25, 2014
  29. ↑ Official Bulletin 2014-0074
  30. ↑ BAG project page
  31. ↑ Cancer Registration: General. In: NICER. Retrieved May 6, 2020 (section Brief History of Cancer Registration in Switzerland ).