ArticleOrphanet journal of rare diseases2026
Coding systems and monitoring practices across the ERN ReCONNET: insights from a comprehensive survey and unmet needs.
Article in Orphanet journal of rare diseases, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
What it found
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Who cites it
1 citing paper in PubMed.
- High Patient Willingness to Grant Broad Consent for Real-World Data Use in Rheumatology-Implications for Real-World Data Platform Governance: Cross-Sectional Study.Journal of medical Internet research · 2026Article
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Authors and funding
30 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundRare and complex connective tissue diseases (rCTDs) pose significant challenges for healthcare systems due to the lack of standardized approaches for recording and monitoring patient data. The European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases (ERN ReCONNET) aims to harmonize patient data recording practices across member centres. This study evaluates current practices and unmet needs related to coding systems and monitoring.
methodsA cross-sectional study design was employed, involving three phases. The first phase, mapped the unmet needs for coding systems and monitoring practices across ERN ReCONNET centres. The second phaseprioritized these unmet needs, and the third phase aimed at defining action points to address those unmet needs by means of a Level of Agreement. We conducted a web‑based survey among ERN ReCONNET centres to evaluate current practices(response rate 75.0% [48/64] in Phase 1); and an additional inquiry in Phase 2 (58 responders) to identify the unmet needs of the Network. Data were analysed using descriptive statistics.
resultsThe initial survey included responses from 48 centres. About 42% of the centres used some form of paper-based records, and only 25% used dedicated biobank software. ICD-10 was predominantly applied for coding diagnoses, sub-diagnoses, and comorbidities, while ORPHAcodes were also employed, though less frequently. Clinicians were primarily responsible for data collection and submission, leading to significant administrative burden. The second survey, with 58 respondents, identified the lack of adoption of ORPHAcodesand the heterogeneity in coding systems as top unmet needs. Additionally, the survey highlighted the significant burden on clinicians and the need for improved information technology(IT) infrastructure to facilitate data extraction for ERN yearly monitoring. Lastly, 7 action points were identified in order to plan tangible actions to address the unmet needs of the rCTDs community.
conclusionThis study highlights the heterogeneity in data documentation practices, coding system usage, and monitoring activities across ERN ReCONNET centres. The findings underscore the need for standardization and optimization of data management processes. Addressing these challenges through digitalization and standardized coding practices is essential for realizing a truly integrated and collaborative network for rare connective tissue diseases across Europe.
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