Access and validation

Governance details

Documents or webpages that describe the overall governance of the data source and processes and procedures for data capture and management, data quality check and validation results (governing data access or utilisation for research purposes).

Biospecimen access

Are biospecimens available in the data source (e.g., tissue samples)?

No

Access to subject details

Can individual patients/practitioners/practices included in the data source be contacted?

No

Description of data collection

In the TREAT NL/BE (TREatment of ATopic eczema, The Netherlands and Belgium) registry, long-term observational data is collected from patients with moderate-to-severe atopic eczema, both children and adults, who start treatment with systemic therapies (e.g., dupilumab, ciclosporin, methotrexate) and phototherapies (e.g., UVB) in daily practice.

At the moment, participating centers include Amsterdam UMC, Huid Medisch Centrum, Centrum Oosterwal, Leids Universitair Medisch Centrum, Medisch Centrum Leeuwarden, Dijklander Ziekenhuis, Onze Lieve Vrouwe Gasthuis, Erasmus MC, Rijnstate Ziekenhuis, Flevoziekenhuis and Universitair Ziekenhuis Gent.

With this registry, we aim to investigate the (cost-)effectiveness and safety of these treatments for atopic eczema on the long term. The TREAT NL registry was established in 2017 and is part of the TREAT Registry Taskforce, an international network of registries within Europe that collect the same data using a core dataset, to ensure uniformity in data collection.
Event triggering registration

Event triggering registration of a person in the data source

Disease diagnosis
Start of treatment
Data source linkage

Linkage

Is the data source described created by the linkage of other data sources (prelinked data source) and/or can the data source be linked to other data source on an ad-hoc basis?

No
Data management specifications that apply for the data source

Data source refresh

Monthly

Possibility of data validation

Can validity of the data in the data source be verified (e.g., access to original medical charts)?

Yes

Data source preservation

Are records preserved in the data source indefinitely?

No

Data source preservation length

15 years

Approval for publication

Is an approval needed for publishing the results of a study using the data source?

Yes
Common Data Model (CDM) mapping

CDM mapping

Has the data source been converted (ETL-ed) to a common data model?

No