A collaborative comparison of international pediatric diabetes registries.
Stefanie LanzingerAnthony ZimmermannAjenthen G RanjanOsman GaniSaira Pons PerezKarin AkessonHolly K O'DonnellMichael WitschSabine E HoferStephanie JohnsonKasper A PilgaardSiv Janne KummernesHolly RobinsonKatarina Eeg-OlofssonOsagie A EbekozienReinhard W HollSvensson JannetTorild SkrivarhaugJustin WarnerMaria E CraigDavid Maahsnull nullPublished in: Pediatric diabetes (2022)
The seven diabetes registries and the SWEET initiative collectively show data of more than 900 centers and around 100,000 pediatric patients, the majority with type 1 diabetes. All share the common objectives of monitoring treatment and longitudinal outcomes, promoting quality improvement and equality in diabetes care and enabling clinical research. All generate regular benchmark reports. Main differences were observed in the definition of the pediatric population, the inclusion of adults, documentation of CGM metrics and collection of raw data files as well as linkage to other data sources. The open benchmarking and access to regularly updated data may prove to be the most important contribution from registries. This study describes aspects of the registries to enable future collaborations and to encourage the development of new registries where they do not exist.
Keyphrases
- electronic health record
- quality improvement
- type diabetes
- big data
- cardiovascular disease
- minimally invasive
- emergency department
- young adults
- drinking water
- metabolic syndrome
- gene expression
- patient safety
- machine learning
- dna methylation
- cross sectional
- adverse drug
- deep learning
- men who have sex with men
- replacement therapy
- childhood cancer