Nora Tabea Sibert

PURPOSE: Down syndrome (DS) (trisomy 21) presents a distinctive cancer profile requiring risk-adapted surveillance strategies. This study examined cancer prevalence and screening participation patterns in individuals with DS to inform clinical care protocols. METHODS: This large-scale retrospective cross-sectional study analyzed German nationwide statutory health insurance outpatient data, comparing 46,362 individuals with DS (International Classification of Diseases [ICD]-10: Q90) with 463,620 matched controls without intellectual disability (including DS), stratified by age, sex, and residential district. Logistic regression analysis evaluated cancer occurrence and screening program participation between groups. RESULTS: Cancer prevalence was lower in the DS group compared with the matched control group (2.4% v 2.8%; odds ratios [OR], 0.85 [95% CI, 0.80 to 0.91]; P < .00001; corrected: P = .00002) and occurred at younger age. However, individuals with DS demonstrated markedly elevated odds for hematologic malignancies: unspecified cell type leukemia (OR, 10.32), lymphatic leukemia (OR, 6.12), and myeloid leukemia (OR, 6.32), and testicular cancer (OR, 4.25). Conversely, breast cancer (OR, 0.36), digestive system tumors (OR, 0.39), and malignant melanomas (OR, 0.52) were significantly less frequent. Notably, individuals with DS participated less frequently in cancer screening programs (17.03% v 26.17%; OR, 0.58 [95% CI, 0.56 to 0.59]). CONCLUSION: The distinctive cancer profile in DS reflects elevated leukemia and testicular cancer risks alongside protection against solid malignancies, consistent with the chromosomal biology of trisomy 21. Reduced screening participation may partially explain lower overall cancer prevalence and warrants future research. These findings underscore the need for syndrome-specific surveillance protocols targeting high-risk malignancies and further molecular characterization of cancer predisposition and protection mechanisms.

Background: Social inequalities in cancer constitute a major public health challenge. A lower socioeconomic position (SEP) is consistently associated with higher exposure to cancer risk factors, lower participation in screening, more advanced stage at diagnosis, poorer survival, and adverse survivorship outcomes. In Germany, these inequalities remain insufficiently addressed in research and health policy. Methods: This paper synthesises evidence and expert perspectives derived from a national workshop organised by the Cancer Epidemiology Working Group of the German Society for Epidemiology (DGEpi) in collaboration with the German Cancer Research Center. More than 30 experts in cancer epidemiology and social inequality research, together with international contributors, reviewed—based on existing conceptual frameworks—the German data landscape, and empirical evidence across the cancer continuum. Structural, methodological, and ethical barriers were identified, and implications for research, policy, and practice were discussed. An international comparison with Denmark was used to contextualise findings. Results: Available evidence demonstrates pronounced socioeconomic inequalities across nearly all stages of the cancer continuum in Germany, including prevention, screening, incidence, diagnosis, survival, and survivorship. However, major research gaps persist. Key barriers include limited availability of individual-level SEP data, reliance on area-based deprivation indices, restricted data linkage, fragmented healthcare structures, and limited integration of equity considerations into national cancer strategies. International experience shows that comprehensive registries, data linkage, and targeted interventions can reduce inequalities. Conclusions: Reducing social inequalities in cancer in Germany requires coordinated and evidence-based action. Priorities include improving SEP data availability and linkage, embedding equity objectives into the National Cancer Plan, implementing targeted interventions for vulnerable groups, and strengthening intersectoral collaboration. Ethical and patient perspectives strongly support responsible use of health data to address avoidable inequalities.

Purpose: Diagnosis with UICC stage IV colorectal cancer often indicates palliative treatment to alleviate symptoms. Data on pain in these patients are still scarce but can help improve symptom management. This study therefore aimed to describe patient-reported pain and quality of life. Methods: 147 palliatively treated stage IV colorectal cancer patients diagnosed between 2018 and 2023 completed the EORTC QLQ-C30 and QLQ-CR29 before and 12 months after treatment initiation within the EDIUM study. Descriptive results for pain and quality of life were examined and compared to reference values. A logistic regression analysis investigated the relationship between quality of life and pain and 1-year survival. Results: The mean (SD) for the “overall pain” score was 26 (32) (T0) and 35 (32) (T1) for rectal cancer patients and 34 (33) (T0) and 35 (32) (T1) for colon cancer patients. This is higher than the reference value (24 (30)) and indicates high average pain levels. The “overall quality of life” score showed means below the reference value (61 (23)), indicating poorer quality of life (colon: 51 (25) (T0), 56 (22) (T1); rectum: 52 (24) (T0), 51 (22) (T1)). Higher pain levels persisted at both time points. The logistic regression results suggest a small relationship between pain and quality of life and 1-year survival. Discussion: This study reveals high levels of pain among palliatively treated colorectal cancer patients, impacting their quality of life. Effective pain management and close monitoring are necessary to improve the quality of life for these patients. Trail number: DRKS00008724.

To enhance international and joint research collaborations in prostate cancer research, data from different sources should use a common data model (CDM) that enables researchers to share their analysis scripts and merge results. The OMOP CDM maintained by OHDSI is such a data model developed for a federated data analysis with partners from different institutions that want to jointly investigate research questions using clinical care data. The German Cancer Society as the scientific lead of the Prostate Cancer Outcomes (PCO) study gathers data from prostate cancer care including routine oncological care data and survey data (incl. patient-reported outcomes) and uses a common data specification (called OncoBox Research Prostate) for this purpose. To further enhance research collaborations outside the PCO study, the purpose of this article is to describe the process of transferring the PCO study data to the internationally well-established OMOP CDM. This process was carried out together with an IT company that specialised in supporting research institutions to transfer their data to OMOP CDM. Of n = 49,692 prostate cancer cases with 318 data fields each, n = 392 had to be excluded during the OMOPing process, and n = 247 of the data fields could be mapped to OMOP CDM. The resulting PostgreSQL database with OMOPed PCO study data is now ready to use within larger research collaborations such as the EU-funded EHDEN and OPTIMA consortium.

PURPOSE: Functional problems such as incontinence and sexual dysfunction after radical prostatectomy (RP) are important outcomes to evaluate surgical quality in prostate cancer (PC) care. Differences in survival after RP between countries are known, but differences in functional outcomes after RP between providers from different countries are not well described. METHODS: Data from a multinational database of patients with PC (nonmetastatic, treated by RP) who answered the EPIC-26 questionnaire at baseline (before RP, T0) and 1 year after RP (T1) were used, linking survey data to clinical information. Casemix-adjusted incontinence and sexual function scores (T1) were calculated for each country and provider on the basis of regression models and then compared using minimally important differences (MIDs). RESULTS: A total of 21,922 patients treated by 151 providers from 10 countries were included. For the EPIC-26 incontinence domain, the median adjusted T1 score of countries was 76, with one country performing more than one MID (for incontinence: 6) worse than the median. Eighteen percent of the variance ( R²) of incontinence scores was explained by the country of the providers. The median adjusted T1 score of sexual function was 33 with no country performing perceivably worse than the median (more than one MID worse), and 34% ( R²) of the variance of the providers' scores could be explained by country. CONCLUSION: To our knowledge, this is the first comparison of functional outcomes 1 year after surgical treatment of patients with PC between different countries. Country is a relevant predictor for providers' incontinence and sexual function scores. Although the results are limited because of small samples from some countries, they should be used to enhance cross-country initiatives on quality improvement in PC care.