[Linkage of claims data with data from epidemiological cancer registries: possibilities and limitations in the German federal states]. / Verknüpfung von Abrechnungsdaten gesetzlicher Krankenkassen mit Daten epidemiologischer Krebsregister: länderspezifische Möglichkeiten und Limitationen.

BACKGROUND: In recent years, there has been an increasing demand for the reuse of research data in accordance with the so-called FAIR principles. This would allow researchers to conduct projects on a broader data basis and to investigate new research questions by linking different data sources. OBJECTIVES: We explored if nationwide linking of claims data from statutory health insurances (SHI) with data from population-based cancer registries can be used to obtain additional information on cancer that is missing in claims data and to assess the validity of SHI tumour diagnoses. This paper focuses on describing the specific requirements of German federal states for such data linkage. MATERIALS AND METHODS: The Pharmacoepidemiological Research Database GePaRD at the Leibniz Institute for Prevention Research and Epidemiology - BIPS and six cancer registries were used as data sources. The logistically complex direct linkage was compared with a less complex indirect linkage. For this purpose, permission had to be obtained for GePaRD and for each cancer registry from the respective responsible authority. RESULTS: Regarding the linkage of cancer registry data with GePaRD, the cancer registries showed profound differences in the modalities for data provision, ranging from a complete rejection to an uncomplicated implementation of linkage procedures. DISCUSSION: In Germany, a consistent legal framework is needed to adequately enable the reuse and record linkage of personal health data for research purposes according to the FAIR principles. The new law on the consolidation of cancer registry data could provide a remedy regarding the linkage of cancer registry data with other data sources.

Data from Population-based Cancer Registration for Secondary Data Analysis: Methodological Challenges and Perspectives.

Population-based cancer registries have a long-standing role in cancer monitoring. Scientific use of cancer registry data is one important purpose of cancer registration, but use of cancer registry data is not restricted to cancer registries. Cancer registration in Germany is currently heading towards population-based collection of detailed clinical data. This development together with additional options for record linkage and long-term follow-up will offer new opportunities for health services and outcome research. Both regional population-based registries and the German Centre for Cancer Registry Data (ZfKD) at the Robert Koch-Institute as well as international cancer registries and consortia or organizations may provide external researchers access to individual or aggregate level data for secondary data analysis. In this review, we elaborate on the access to cancer registry data for research purposes, availability of specific data items, and options for data linkage with external data sources. We also discuss as well as on limitations in data availability and quality, and describe typical biases in design and analysis.

Incidence of advanced colorectal cancer in Germany: comparing claims data and cancer registry data.

BACKGROUND: Incidence rates of advanced cancer stages are important, e.g., for monitoring cancer screening programs. However, information from cancer registries on tumor stage is often incomplete. Exemplified by colorectal cancer (CRC), we explored the potential of German claims data to estimate incidence rates of advanced cancer stages. METHODS: We used claims data of the German Pharmacoepidemiological Research Database (GePaRD; information on > 20 million persons) to identify incident patients with advanced CRC based on ICD-10 codes for CRC and secondary malignant neoplasms. We calculated annual age-standardized incidence rates (ASIRs) of advanced CRC per 100,000 for the years 2008-2015 stratified by the presence of affected lymph nodes only (C77) vs. distant metastases (C78-C79) and compared them to ASIRs determined using data (2008-2014) from the German Centre for Cancer Registry Data (ZfKD). RESULTS: In GePaRD, the ASIRs of advanced CRC per 100,000 in 2014 were 21.5 among men and 14.9 among women. Compared to ZfKD data the ASIR in GePaRD was 2.58 lower in men and 0.27 higher in women (per 100,000) in 2014. Stratification by presence of distant metastases showed divergent patterns: the ASIRs regarding distant metastases were ~ 50% (women) and ~ 30% (men) higher, and the ASIRs regarding affected lymph nodes only were ~ 40% lower in GePaRD as compared to ZfKD. CONCLUSION: While ASIRs of advanced CRCs overall agreed well between claims and cancer registry data in 2014, the analyses stratified by presence of distant metastases showed differences. Cancer registries might underestimate ASIRs of CRCs with distant metastases.

[Prospects for a nationwide mortality registry: lessons learned from the Bremen Mortality Index]. / Perspektiven für ein bundesweites Mortalitätsregister: Erfahrungen mit dem Bremer Mortalitätsindex.

The time of death and the diseases leading to death provide important information for health research and disease registries. They facilitate conclusions about the state of health of a population and contribute to the assessment of health promotion measures as well as disease prevention and care. In many countries, these data are provided through mortality registries.In Germany, these data are available on death certificates, which must be filled out by physicians with all information available for each death. However, use of these data for research is very difficult as there is no central registry. Instead, regional health authorities archive the respective death certificates locally. Furthermore, the data provided on death certificates are partly uncoded or only available in paper form. Bremen is the only federal state that has more than 20 years of expertise with a regional mortality registry that demonstrates how health research can benefit from an efficient processing and provision cause of death (CoD) data and how this may also improve the quality of cancer registration.Currently, automatic coding of the CoD by the statistical offices is being implemented on a national level. As a consequence, the free-text information from death certificates will have to be recorded electronically. This requires organizational restructuring that offers a unique opportunity to make all the necessary provisions that are needed for the establishment of mortality registries at the federal state level. This would be an important step towards the establishment of a long overdue national mortality registry - a research data infrastructure guaranteeing international competitiveness.

Survival of patients with hepatobiliary tract and duodenal cancer sites in Germany and the United States in the early 21st century.

Hepatobiliary tract cancers (HBTCs) are a heterogeneous group of cancers with high mortality. Because most of these cancers, with the exception of hepatocellular carcinoma (HCC), are rare, few data are available concerning the population level survival expectations of patients with HBTC. Here, we describe survival of patients with HBTC in Germany with comparison to survival in the US. Therefore, data were extracted from 12 databases in Germany and the Surveillance, Epidemiology and End Results (SEER13) database in the US. Period analysis and modeled period analysis were used to calculate 5-year relative survival estimates for patients with HBTC diagnosed from 1997 to 2013. HCC was the most common HBTC in each database, accounting for over 1/3 of HBTC in Germany and about half of cases in the US. Overall age adjusted 5-year relative survival for HBTC in 2006-2013 was 19.1% in Germany and 20.6% in the US. Five-year relative survival increased by 3.8% units in Germany and 4.5% units in the US between 2002-2005 and 2010-2013. Five-year relative survival for individual types of HBTC ranged from 9.8% in Germany and 2.9% in the US for not otherwise specified biliary tract cancers to 44.4% and 50.1%, respectively, in Germany and the US for duodenal cancers. In conclusion, survival for HBTC remains poor in both Germany and the US, although a small increase in survival in the past decade was observed. Further work to find better treatment options for HBTC is needed to improve survival.

Risk of second primary cancers in women diagnosed with endometrial cancer in German and Swedish cancer registries.

Along with the increasing incidence and favorable prognosis, more women diagnosed with endometrial cancer may develop second primary cancers (SPCs). We aimed at investigating risk of SPCs after endometrial cancer in Germany and Sweden to provide insight into prevention strategies for SPCs. Endometrial cancer patients diagnosed at age ≥15 years in Germany during 1997-2011 and in Sweden nationwide during 1997-2012 were selected. Standardized incidence ratios (SIRs), calculated as the ratio of observed to expected numbers of cases, were used to assess the risk of a specific second cancer after endometrial cancer for both German and Swedish datasets. Among 46,929 endometrial cancer survivors in Germany and 18,646 in Sweden, overall 2,897 and 1,706 SPCs were recorded, respectively. Significantly elevated SIRs were observed in Germany for ovarian (SIR = 1.3; 95%CI:1.1-1.5) and kidney cancers [1.6 (1.3-1.8)], while in Sweden the SIRs were 5.4 (4.6-6.3) and1.4 (1.0-1.9), respectively. Elevated risk for second ovarian endometrioid carcinoma was pronounced after early (<55 years) onset endometrial cancer in Germany [9.0 (4.8-15)] and Sweden [7.7 (5.1-11)]. In Germany elevated risks were found for second ovarian endometrioid carcinoma after endometrioid histology of first endometrial cancer [6.3 (4.0-9.4)] and for second kidney cancer after clear cell histology of endometrial cancer [4.9 (1.6-11)]. We found exceptionally elevated risk of second ovarian endometrioid carcinoma after endometrial cancer of the same histology or of early onset. Risk for second kidney cancer was also increased, particularly after endometrial cancer of clear cell histology. Cancer prevention strategies should focus on these cancers after endometrial cancer diagnosis.

Survival in patients with acute myeloblastic leukemia in Germany and the United States: Major differences in survival in young adults.

Previous epidemiologic studies on AML have been limited by the rarity of the disease. Here, we present population level data on survival of patients with AML in Germany and the United States (US). Data were extracted from 11 population-based cancer registries in Germany and the Surveillance, Epidemiology, and End Results (SEER13) database in the US. Patients diagnosed with AML in 1997-2011 were included. Period analysis was used to estimate 5-year relative survival (RS) and trends in survival in the early 21st century. Overall 5-year age-adjusted RS for patients with AML in 2007-2011 was greater in Germany than in the US at 22.8% and 18.8%, respectively. Five-year RS was higher in Germany than in the US at all ages, with particularly large differences at ages 15-24 for whom 5-year RS was 64.3% in Germany and 55.0% in the US and 35-44, with 5-year RS estimates of 61.8% in Germany and 46.6% in the US. Most of the difference in 5-year RS was due to higher 1-year RS, with overall 1-year RS estimates of 47.0% in Germany and 38.5% in the US. A small increase in RS was observed between 2003-2005 and 2009-2011 in both countries, but no increase in survival was observed in either country for ages 75+. To our knowledge, this is the first detailed description of AML survival in Germany. Comparison to the US suggests that further analysis into risk factors for poor outcomes in AML in the US may be useful in improving survival.

Survival of patients with gastric lymphoma in Germany and in the United States.

BACKGROUND AND AIM: This study aims to examine survival for gastric lymphomas and its main subtypes, mucosa-associated lymphoid tissue lymphoma (MALT), and diffuse large B-cell lymphoma (DLBCL), in Germany and in the United States. METHODS: Data for patients diagnosed in 1997-2010 were used from 10 population-based German cancer registries and compared to the data from the US Surveillance, Epidemiology and End Results (SEER) 13 registries database. Patients age 15-74 diagnosed with gastric lymphomas were included in the analysis. Period analysis and modeled period analysis were used to estimate 5-year and 10-year relative survival (RS) in 2002-2010 and survival trends from 2002-2004 to 2008-2010. RESULTS: Overall, the database included 1534 and 2688 patients diagnosed with gastric lymphoma in 1997-2010 in Germany and in the United States, respectively. Survival was substantially higher for MALT (5-year and 10-year RS: 89.0% and 80.9% in Germany, 93.8% and 86.8% in the United States) than for DLBCL (67.5% and 59.2% in Germany, and 65.3% and 54.7% in the United States) in 2002-2010. Survival was slightly higher among female patients and decreased by age for gastric lymphomas combined and its main subtypes. A slight, nonsignificant, increase in the 5-year RS for gastric lymphomas combined was observed in Germany and the United States, with increases in 5-year RS between 2002-2004 and 2008-2010 from 77.1% to 81.0% and from 77.3% to 82.0%, respectively. Five-year RS of MALT exceeded 90% in 2008-2010 in both countries. CONCLUSIONS: Five-year RS of MALT meanwhile exceeds 90% in both Germany and the United States, but DLBCL has remained below 70% in both countries.

Survival among adolescents and young adults with cancer in Germany and the United States: an international comparison.

Serious concern arose in the scientific literature about the state of and progress in cancer survival among adolescent and young adult (AYA) patients in the recent years. We provide an up-to-date international comparison of survival among AYA patients. Using population-based cancer data from 11 German cancer registries and the SEER Program of the United States (covering populations of 39 and 33 million people, respectively), standardized tumor group classifications, period analysis and modeling, we compared the 5-year relative survival of AYA patients in the age groups 15-29 and 30-39 to survival seen among adults aged 40-49 for the 2002-2006 period. Additionally, we also provide an age-specific survival comparison between the two countries. In 2002-2006, for the overwhelming majority of the more than 30 types of cancer examined, AYA patients aged both 15-29 and 30-39 years had higher or similar survival than patients in the age group 40-49 in both countries. A numerically large and statistically significant survival deficit among AYA patients was only found for breast carcinomas in both populations, and colorectal and stomach carcinoma in the United States for the age group 15-29. Overall, results of the country-specific comparisons did not indicate systematic differences. With very few exceptions, no survival deficit between AYA patients and adults aged 40-49 years was found in either of the examined countries in the first decade of the 21st century.

Survival of cervical cancer patients in Germany in the early 21st century: a period analysis by age, histology, and stage.

PURPOSE: Population-based studies on cervical cancer providing survival estimates by age, histology, and stage have been sparse. We aimed to derive most up-to-date and detailed survival estimates for cervical cancer patients in Germany. METHODS: We used a pooled German national dataset including data from 11 cancer registries covering a population of 33 million people. Included were 15 685 patients diagnosed with cervical cancer from 1997 to 2006. Period analysis was performed to calculate the five-year relative survival (RS) 2002-2006. Trends in survival between 2002 and 2006 were examined using model-based period analysis. Age-adjustment was done using five age groups (15-44, 45-54, 55-64, 65-74, and 75 + years). RESULTS: Overall, age-adjusted five-year relative survival in 2002-2006 was 64.7%. A strong age gradient was observed, with five-year RS decreasing from 81.7% in age group 15-49 years to 46.3% in age group 70 + years. Prognosis furthermore strongly varied by stage, with age-adjusted five-year RS reaching 84.6% for localized, 48.2% for regional, and 17.9% for distant stage. From 2002 to 2006, a significant improvement (4.7 percent units) in overall age-adjusted five-year RS was seen. The improvement was most pronounced for age groups 55-64 years (from 54.2 to 65.6%) and 65-74 years (from 50.0 to 58.1%). CONCLUSION: In this first comprehensive population-based study from Germany, prognosis of cervical cancer strongly varied by age and stage. Prognosis continued to improve, in particular in age range 55-74 years, in the five-year period assessed.

Survival of stomach and esophagus cancer patients in Germany in the early 21st century.

BACKGROUND: Esophagus and stomach cancers are associated with poor prognosis. But most published population-based cancer survival estimates for stomach and esophagus cancer refer to survival experience of patients diagnosed in the 1990s or earlier years. The aim of this study was to provide up-to-date survival estimates and trends for patients with stomach and esophagus cancer in Germany. MATERIAL AND METHODS: Our analysis is based on data from 11 population-based cancer registries, covering 33 million inhabitants. Patients diagnosed with stomach and esophagus cancer in 1997-2006 were included. Period analysis was used to derive five-year relative survival estimates and trends by age, sex, cancer subsite, and stage for the time period of 2002-2006. German and US survival estimates were compared utilizing the SEER 13 database. RESULTS: Overall age-standardized five-year relative survival was 31.8% and 18.3% for stomach and esophagus cancer, respectively, compared to 27.2% and 17.4% in the US. Survival was somewhat higher among female than among male patients for both cancer sites (33.6% vs. 30.6% and 21.5% vs. 17.5%, respectively) and much higher for non-cardia stomach cancer (40.4%) than for cardia cancer (23.4%). From 2002 to 2006, a moderate increase in five-year relative survival by 2.7 percent units was observed for non-cardia stomach cancer patients in Germany (p < 0.001). CONCLUSION: Five-year relative cancer survival has reached levels around 40% for patients with non-cardia stomach cancer in Germany in the early 21st century, whereas it remained at lower levels around 20% for patients with esophagus and cardia cancer.

Survival for patients with rare haematologic malignancies: Changes in the early 21st century.

INTRODUCTION: Population-level survival has improved for common haematologic malignancies in the early 21st century. However, relatively few population-level data are available for rare haematologic malignancies. METHODS: Data were extracted from 12 cancer registries in Germany and the Surveillance, Epidemiology and End Results database in the United States (US). Cases of haematologic malignancies with an incidence of less than 1 per 100,000 were selected for analysis. Period analysis was used to determine 5-year relative survival (RS) for the years 2003-2012, and modelled period analysis was used to determine changes in survival between 2003-2007 and 2008-2012. RESULTS: Seven individual haematologic malignancies which met criteria were identified. Overall 5-year age-adjusted RS was 62.4% in Germany and 57.0% in the US in 2003-2012, with a good deal of variability by individual haematologic malignancy, ranging from less than 30% for chronic monomyeloid leukaemia to greater than 85% for hairy cell leukaemia and mycosis fungoides. Five-year RS increased significantly between 2003-2007 and 2008-2012 for patients with mantle cell lymphoma, Burkitt's lymphoma and hairy cell leukaemia in Germany and for patients with mantle cell lymphoma and anaplastic large-cell kinase+ anaplastic lymphoma in the US. CONCLUSIONS: Survival for rare haematologic malignancies varied considerably by cancer entity. Overall 5-year RS was slightly higher in Germany compared to the US. Survival estimates increased for a minority of haematologic malignancies between 2003-2007 and 2008-2012. Further research into the best treatment options for rare malignancies is needed to further improve survival.

Comparative analysis of premature mortality among urban immigrants in Bremen, Germany: a retrospective register-based linkage study.

OBJECTIVES: The main objective of this study was to explore differences in mortality patterns among two large immigrant groups in Germany: one from Turkey and the other from the former Soviet Union (FSU). To this end, we investigated indicators of premature mortality. DESIGN: This study was conducted as a retrospective population-based study based on mortality register linkage. Using mortality data for the period 2004-2010, we calculated age-standardised death rates (SDR) and standardised mortality ratios (SMR) for premature deaths (

Trends in survival of chronic lymphocytic leukemia patients in Germany and the USA in the first decade of the twenty-first century.

BACKGROUND: Recent population-based studies in the United States of America (USA) and other countries have shown improvements in survival for patients with chronic lymphocytic leukemia (CLL) diagnosed in the early twenty-first century. Here, we examine the survival for patients diagnosed with CLL in Germany in 1997-2011. METHODS: Data were extracted from 12 cancer registries in Germany and compared to the data from the USA. Period analysis was used to estimate 5- and 10-year relative survival (RS). RESULTS: Five- and 10-year RS estimates in 2009-2011 of 80.2 and 59.5%, respectively, in Germany and 82.4 and 64.7%, respectively, in the USA were observed. Overall, 5-year RS increased significantly in Germany and the difference compared to the survival in the USA which slightly decreased between 2003-2005 and 2009-2011. However, age-specific analyses showed persistently higher survival for all ages except for 15-44 in the USA. In general, survival decreased with age, but the age-related disparity was small for patients younger than 75. In both countries, 5-year RS was >80% for patients less than 75 years of age but <70% for those age 75+. CONCLUSIONS: Overall, 5-year survival for patients with CLL is good, but 10-year survival is significantly lower, and survival was much lower for those age 75+. Major differences in survival between countries were not observed. Further research into ways to increase survival for older CLL patients are needed to reduce the persistent large age-related survival disparity.

Survival of elderly patients with multiple myeloma-Effect of upfront autologous stem cell transplantation.

BACKGROUND: The aim of this study was to determine the value of upfront autologous transplantation (ASCT) in elderly patients (60-79 years) with myeloma. METHODS: We analysed relative survival (RS) of patients diagnosed in 1998-2011 and treated with ASCT within 12 months after diagnosis in Germany (n = 3591; German Registry of Stem Cell Transplantation) and compare RS with survival of myeloma patients diagnosed in the same years in Germany (n = 13,903; population-based German Cancer Registries). RESULTS: Utilisation of ASCT has increased rapidly between 2000-2002 and 2009-2011 (60-64years: 7.0-43.0%; 65-69 years: 6.6-23.7%; 70-79 years: 0.4-4.0%). Comparison of 5-year RS of patients from the general German myeloma population who have survived the first year after diagnosis with 5-year RS of patients treated with ASCT revealed higher survival for transplanted patients among all age groups (60-64: 59.2% versus 66.1%; 65-69: 57.4% versus 61.7%; 70-79: 51.0% versus 56.6%). RS increased strongly between 2003-2005 and 2009-2011 for the general German myeloma population (+8.5%) and for patients treated with ASCT (+11.8%). Differences in RS between these groups increased over time from +1.9% higher age-standardised survival in transplanted patients in 2003-2005 to 5.2% higher survival in 2009-2011. CONCLUSION: We conclude that upfront ASCT might be a major contributor to improved survival for elderly myeloma patients in Germany.

Lung cancer survival in Germany: A population-based analysis of 132,612 lung cancer patients.

OBJECTIVES: Lung cancer is the most common cancer-related death worldwide. In Germany it accounts for 25% of cancer deaths in men, and 14% in women. The aim of this study is to provide an overview of 5-year relative survival by sex, age, histology, and tumour stage in Germany representing a population of 26.7 million people. MATERIALS AND METHODS: The study is based on a pooled German dataset including data from 12 population-based cancer registries covering around one third of the German population. A total of 132,612 patients diagnosed with lung cancer from 2002 to 2010 were included in the analysis. Survival estimates for the time period 2007-2010 were calculated using period analysis. Differences in survival between sexes were tested for statistical significance by model-based period analysis (poisson regression model). The relative excess risk (RER) of death (women vs. men) was extracted from the model with the p value for the difference in RER. RESULTS: The overall age adjusted 5-year relative survival was 15.5% (standard error (SE) 0.2) for men and 20.3% (SE 0.3) in women. Survival differed markedly according to age (men: <60 years 18.5% vs. 80+ years 8.4% and women 23.7% vs. 10.6%, respectively), histology (largest difference between histological groups: men 25.7 and women 44.4% points) and stage (men: UICC Ia 62.9%, vs. UICC IV 4.6% and women 75.2% vs. 7.0%, respectively). Our study showed survival advantages for women compared to men, most notably in younger aged patients (RER 0.83, p<0.0001), patients with adenocarcinoma (RER 0.80, p<0.0001), and patients with lower stage cancer (RER 0.62, p<0.0001). CONCLUSIONS: This study presents up-to-date survival estimates for lung cancer in Germany. Compared to other European countries survival was relatively high. Women showed higher survival than men independent of age, histology and stage. The reasons for the survival differences require further clarification.

Survival of ovarian cancer patients in Germany in the early 21st century: a period analysis by age, histology, laterality, and stage.

Population-based studies on ovarian cancer providing survival estimates by age, histology, laterality, and stage have been sparse. We aimed to derive the most up-to-date and detailed survival estimates for ovarian cancer patients in Germany. We used a pooled German national dataset including data from 11 cancer registries covering 33 million populations. A total of 21 651 patients diagnosed with ovarian cancer in 1997-2006 were included. Period analysis was carried out to calculate the 5-year relative survival (RS) for the years 2002-2006. Trends in survival between 2002 and 2006 were examined using model-based period analysis. Age adjustment was performed using five age groups (15-44, 45-54, 55-64, 65-74, and 75+ years). Overall, the age-adjusted 5-year RS in 2002-2006 was 41%. A strong age gradient was observed, with a decrease in the 5-year RS from 67% in the age group 15-49 years to 28% in the age group 70+ years. Furthermore, the prognosis varied markedly by histology, laterality, and stage, with the age-adjusted 5-year RS ranging from 25% (for carcinoma not otherwise specified) to 81% (for stromal cell carcinoma), reaching 46% for unilateral and 32% for bilateral carcinoma and reaching 82% for Federation of Gynecology and Obstetrics (FIGO) stages I and II, 36% for FIGO stage III, and 18% for FIGO stage IV. No improvement in survival could be observed for any of the subgroups in the period between 2002 and 2006. Our analyses suggest that an improvement in the 5-year RS for ovarian cancer may have stagnated in the early 21st century and underline the need for a more effective translation of therapeutic innovation into clinical practice.