The Danish Sarcoma Database

Abstract

AimThe aim of the database is to gather information about sarcomas treated in Denmark in order to continuously monitor and improve the quality of sarcoma treatment in a local, a national, and an international perspective.Study populationPatients in Denmark diagnosed with a sarcoma, both skeletal and ekstraskeletal, are to be registered since 2009.Main variablesThe database contains information about appearance of symptoms; date of receiving referral to a sarcoma center; date of first visit; whether surgery has been performed elsewhere before referral, diagnosis, and treatment; tumor characteristics such as location, size, malignancy grade, and growth pattern; details on treatment (kind of surgery, amount of radiation therapy, type and duration of chemotherapy); complications of treatment; local recurrence and metastases; and comorbidity. In addition, several quality indicators are registered in order to measure the quality of care provided by the hospitals and make comparisons between hospitals and with international standards.Descriptive dataDemographic patient-specific data such as age, sex, region of living, comorbidity, World Health Organization’s International Classification of Diseases – tenth edition codes and TNM Classification of Malignant Tumours, and date of death (after yearly coupling to the Danish Civil Registration System). Data quality and completeness are currently secured.ConclusionThe Danish Sarcoma Database is population based and includes sarcomas occurring in Denmark since 2009. It is a valuable tool for monitoring sarcoma incidence and quality of treatment and its improvement, postoperative complications, and recurrence within 5 years follow-up. The database is also a valuable research tool to study the impact of technical and medical interventions on prognosis of sarcoma patients.

Incidence Patterns and Survival of Gynecological Sarcoma in Germany: Analysis of Population-Based Cancer Registry Data on 1066 Women

“…16 The Danish Sarcoma Database only recently established a collaboration with the Danish Gynaecological Cancer Database, and results on interobserver heterogeneity are awaiting. 17 For ovarian sarcoma, 5-year relative survival rates of 30% across Europe have been reported from the EUROCARE study for the years 2000 to 2007, but because carcinosarcoma were included in this analysis, their results are not directly comparable to the rates we found for ovarian GS (45.9%). 12 …”

Long‐term results of the Global Modular Replacement System tumor prosthesis for reconstruction after limb‐sparing bone resections in orthopedic oncologic conditions: Results from a national cohort

“…Complete follow‐up included X‐ray (Figure ) examination and clinical exams using the MSTS score for the evaluation of the functional results at RH, and the same information for the AUH patients was retrieved from the Danish Sarcoma Register (DSR) . MSTS score is a physician‐completed score containing six categories: pain, function, emotionally acceptance of the treatment result, use of support, walking, and gait function.…”

The opportunities and shortcomings of using big data and national databases for sarcoma research

“…In one study, a data set compiled from 6 dedicated sarcoma centers in 6 countries was used to validate a nomogram that predicts disease-free survival and survival after primary resection for retroperitoneal sarcoma. 29 All patients with sarcoma in Denmark are referred to 2 high-volume centers, where all clinicians are obligated to report to the database, and consent is not required for data collection and registration; this makes it a very comprehensive data set. 28 Other successful sarcoma-specific databases have been cited in the literature.…”

“…28 The validation of this retroperitoneal sarcoma nomogram provides oncologists with a more accurate tool for calculating prognosis than the current American Joint Commission on Cancer classification. 29 Data for this database are entered by the clinicians responsible for the patient and are audited by dedicated database managers who validate all data with medical records. A multidisciplinary Danish sarcoma group developed the national, centralized Danish Sarcoma Database (DSD) in 2009, and since its inception, there have been 2000 patients registered in the database.…”

“…28 Other successful sarcoma-specific databases have been cited in the literature. 29 The database allows linkage to the Danish Civil Registration System for mortality and demographic variables as well as other databases to capture gynecologic sarcomas that are otherwise not included in the DSD. 29 All patients with sarcoma in Denmark are referred to 2 high-volume centers, where all clinicians are obligated to report to the database, and consent is not required for data collection and registration; this makes it a very comprehensive data set.…”