The article "Breaking down the fences among registries on autoinflammatory diseases: the E-Merge project" written by Yulia Vyzhga, Marco Gattorno and al. presents the results of a collaborative effort among three major European registries (Eurofever, JIR-cohort, and AID-Net) focusing on autoinflammatory diseases (AIDs). These diseases are associated with dysregulations in the innate immune system and are characterized by inflammation in the body.
The aim of the project was to synchronize data from these registries to gain insights into the epidemiological, clinical, and genetic aspects of AIDs.
The registries covered a total of 7,825 patients from 278 participating centers in different countries. The study not only included pediatric patients but also adults with newly diagnosed AIDs.
The results indicate a significant potential for collaborative research using existing data from these registries. The study revealed important findings regarding the distribution of patients across different regions, potential diagnostic delays, availability of genetic testing, and the use of various treatment options.
While merging data from different registries posed some challenges, the study highlighted the importance of standardizing data collection methods and longitudinal follow-up protocols for more robust research outcomes.
Collaborative efforts are crucial in studying rare diseases like AIDs, as they enable researchers to overcome limitations and improve the quality of medical care for affected patients.
Overall, the E-Merge project demonstrates the benefits of breaking down
barriers among registries and collaborating to enhance our understanding and
management of autoinflammatory diseases.
The full article is available in open access in the Orphan journal of rare disease.
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By participating in the worldwide CLIPS project, you help to improve patient management and long-term-outcome.
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