Development Of A Linked Database For Cystic Fibrosis Research By Integrating A Patient Registry With Administrative Claims Data

Jiao, Tianze; Biskupiak, JE; Ye, X.; Unni, Sudhir; Dowd, Christopher F.; Fink, Aliza K.; Feng, Lisa Bo; Erdo, J.; Brixner, Diana

doi:10.1016/j.jval.2016.03.1767

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“…There is an increasing interest in understanding health, social and economic consequences of CF beyond what is captured in the registries. This is highlighted by the increasing number of studies linking EHR to other CF Registries , for example to study the economic impact of CF [28] or to address detailed questions relating to in-hospital care of people with CF [29]. In this study, we have shown the importance of using multiple data sources to identify individuals with CF if a gold standard (e.g.…”

Section: Discussionmentioning

confidence: 96%

Identifying children with Cystic Fibrosis in population-scale routinely collected data in Wales

Griffiths

Schlüter

Akbari

et al. 2020

IJPDS

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Introduction The challenges in identifying a cohort of people with a rare condition can be addressed by routinely collected, population-scale electronic health record (eHR) data, which provide large volumes of data at a national level. This paper describes the challenges of accurately identifying a cohort of children with Cystic Fibrosis (CF) using eHR and their validation against the UK CF Registry. Objectives To establish a proof of principle and provide insight into the merits of linked data in CF research and the benefits of access to multiple data sources. In particular, the UK CF Registry data, and to demonstrate the opportunity it represents as a resource for future CF research. Method Three eHR data sources were used to identify children with CF born in Wales between 1st January 1998 and 31st August 2015 within the Secure Anonymised Information Linkage (SAIL) Databank. The UK CF Registry was later acquired by SAIL and linked to the eHR cohort to validate the cases and explore the reasons for misclassifications. Results We identified 352 children with CF in the three eHR data sources. This was greater than expected based on historical incidence rates in Wales. Subsequent validation using the UK CF Registry found that 257 (73%) of these were true cases. Over 98% of individuals identified as CF cases in all three eHR data sources were confirmed as true cases; but this was only the case for 19.8% of those identified in a single data source. Conclusion Identifying health conditions in eHR data can be challenging, so data quality assurance and validation is important or the merit of the research is undermined. This retrospective review identifies some of the challenges in identifying CF cases and demonstrates the benefits of linking cases across multiple data sources to improve quality.

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Section: Discussionmentioning

confidence: 96%

Identifying children with Cystic Fibrosis in population-scale routinely collected data in Wales

Griffiths

Schlüter

Akbari

et al. 2020

IJPDS

View full text Add to dashboard Cite

show abstract

Development Of A Linked Database For Cystic Fibrosis Research By Integrating A Patient Registry With Administrative Claims Data

Abstract: Medical Record (EMR) analysis were to understand patient characteristics within current clinical care, to optimize the study design, and to reduce burden on sites and patients. Methods: We conducted an analysis of 11 country-specific EMR data sources (USA,

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Identifying children with Cystic Fibrosis in population-scale routinely collected data in Wales

Identifying children with Cystic Fibrosis in population-scale routinely collected data in Wales

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