Dataset Information

The National Swedish Lymphoma Register - a systematic validation of data quality.

ABSTRACT:

Background and purpose

The Swedish Lymphoma Register (SLR) was initiated in the year 2000 with the aim to monitor quality of care in diagnostics, treatment and outcome of all lymphomas diagnosed nationally among adults. Here, we present the first systematic validation of SLR records as a basis for improved register quality and patient care.

Patients and methods

We evaluated timeliness and completeness of register records among patients diagnosed with lymphoma in the SLR (n = 16,905) compared with the National Cancer Register for the period 2013-2020. Comparability was assessed through evaluation of coding routines against national and international guidelines. Accuracy of 42 variables was evaluated through re-abstraction of data from medical records among 600 randomly selected patients diagnosed in 2016-2017 and treated across all six Swedish healthcare regions. Results: Completeness was high, >95% per year for the period 2013-2018, and >89% for 2019-2020 compared to the National Cancer Register. One in four patients was registered within 3 months, and 89.9% within 2 years of diagnosis. Registration instructions and coding procedures followed the prespecified guidelines. Missingness was generally low (<5%), but high for occasional variables, for example, those describing maintenance and consolidative treatment. Exact agreement of categorical variables was high overall (>80% for 24/34 variables), especially for treatment-related data (>80% for 17/19 variables).

Interpretation

Completeness and accuracy are high in the SLR, while timeliness could be improved. Finetuning of variable registration guided by this validation can further improve reliability of register reports and advance service to lymphoma patients and health care in the future.

SUBMITTER: Ekstrom Smedby K

PROVIDER: S-EPMC11332524 | biostudies-literature | 2024 Jul

REPOSITORIES: biostudies-literature

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Publications

The National Swedish Lymphoma Register - a systematic validation of data quality.

Ekström Smedby Karin K Eloranta Sandra S Wästerlid Tove T Falini Victor V Jerlström Urban U Ellin Fredrik F Papworth Karin K Westerberg Johanna J Lewerin Catharina C Andersson Per-Ola PO Lind Kristjansdottir Hallgerdur H Brandefors Lena L Mörth Charlott C Hallén Karin K Kuric Nevzeta N Abu Sabaa Amal A Wahlin Björn E BE Molin Daniel D Enblad Gunilla G Hörstedt Ann-Sofi AS Jerkeman Mats M Glimelius Ingrid I

Acta oncologica (Stockholm, Sweden) 20240710

<h4>Background and purpose</h4>The Swedish Lymphoma Register (SLR) was initiated in the year 2000 with the aim to monitor quality of care in diagnostics, treatment and outcome of all lymphomas diagnosed nationally among adults. Here, we present the first systematic validation of SLR records as a basis for improved register quality and patient care.<h4>Patients and methods</h4>We evaluated timeliness and completeness of register records among patients diagnosed with lymphoma in the SLR (n = 16,90 ...[more]

PMID: 38988133

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Project description:IntroductionDespite the high prevalence of miscarriages, they are not systematically registered and few epidemiological studies have been done. As Finnish health registries are comprehensive and widely used in research, we validated the Finnish register data concerning diagnostics and treatment of miscarriage, and treatment-related adverse events.Material and methodsWe conducted a validation study regarding miscarriage-related codes of diagnoses and surgical procedures in a Finnish National Hospital Discharge Registry (NHDR) by comparing the information from the NHDR with that of the hospital records. We selected a random sample of 4 months during 1998-2016 from three hospitals, comprising 687 women aged 15-49 experiencing a first miscarriage during follow-up. Women with diagnoses unrelated to miscarriage, or proven to be other than miscarriage, were excluded. The final sample consisted of 643 women with confirmed miscarriage, which was used for analyses regarding the diagnosis, treatment and adverse events of miscarriage treatment.ResultsThe majority of miscarriages registered in the NHDR were confirmed by the hospital records (positive predictive value [PPV] = 93.6% [95% confidence interval [CI] 91.8%-95.4%]). Different types of miscarriage were also reliably identified; spontaneous abortion with PPV = 85.6% (95% CI 80.9%-89.2%), missed abortion with PPV = 92.7% (95% CI 88.8%-95.3%) and blighted ovum with PPV = 91.1% (95% CI 84.3%-95.1%). The PPV of surgical treatment (62.2% [95% CI 55.7%-68.3%]) was lower than the PPV of non-surgical treatment (93.3% [95% CI 90.5%-95.3%]). The diagnoses regarding adverse events of miscarriage treatment could be reliably identified. The PPV for clinical infections was 76.0% (95% CI 56.6%-88.5%) and for retained products of conception or/and vaginal bleeding 96.8% (95% CI 83.8%-99.4%).ConclusionsThe coverage of the NHDR was good concerning identification of miscarriages, different types of miscarriages and non-surgical treatment. Nevertheless, there is a need for clearly defined procedural codes concerning to medical treatment of miscarriage. The register-based data are reliable and practicable for both clinical evaluation and research concerning miscarriage.

Project description:BackgroundSequencing of the human genome and the subsequent analyses have produced immense volumes of data. The technological advances have opened new windows into genomics beyond the DNA sequence. In parallel, clinical practice generate large amounts of data. This represents an underused data source that has much greater potential in translational research than is currently realized. This research aims at implementing a translational medicine informatics platform to integrate clinical data (disease diagnosis, diseases activity and treatment) of Rheumatoid Arthritis (RA) patients from Karolinska University Hospital and their research database (biobanks, genotype variants and serology) at the Center for Molecular Medicine, Karolinska Institutet.MethodsRequirements engineering methods were utilized to identify user requirements. Unified Modeling Language and data modeling methods were used to model the universe of discourse and data sources. Oracle11g were used as the database management system, and the clinical development center (CDC) was used as the application interface. Patient data were anonymized, and we employed authorization and security methods to protect the system.ResultsWe developed a user requirement matrix, which provided a framework for evaluating three translation informatics systems. The implementation of the CDC successfully integrated biological research database (15172 DNA, serum and synovial samples, 1436 cell samples and 65 SNPs per patient) and clinical database (5652 clinical visit) for the cohort of 379 patients presents three profiles. Basic functionalities provided by the translational medicine platform are research data management, development of bioinformatics workflow and analysis, sub-cohort selection, and re-use of clinical data in research settings. Finally, the system allowed researchers to extract subsets of attributes from cohorts according to specific biological, clinical, or statistical features.ConclusionsResearch and clinical database integration is a real challenge and a road-block in translational research. Through this research we addressed the challenges and demonstrated the usefulness of CDC. We adhered to ethical regulations pertaining to patient data, and we determined that the existing software solutions cannot meet the translational research needs at hand. We used RA as a test case since we have ample data on active and longitudinal cohort.

Dataset Information

The National Swedish Lymphoma Register - a systematic validation of data quality.

Background and purpose

Patients and methods

Interpretation

Publications

The National Swedish Lymphoma Register - a systematic validation of data quality.

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