AI Article Synopsis
- - The I-CAH Registry was created in 2014 to specifically track congenital adrenal hyperplasia (CAH) after the success of the I-DSD Registry in the 2000s.
- - It serves as an international resource for clinical care benchmarking and supports research by collecting standardized data on CAH.
- - The registry also enables global collaboration for monitoring new treatments and adheres to international standards for rare disease registries, making it valuable for stakeholders involved in CAH care.
Article Abstract
To provide an overview of the I-CAH Registry. Following the successful roll-out of the I-DSD Registry in the 2000s, it was felt that there was a need for a registry for congenital adrenal hyperplasia (CAH) and this was launched in 2014 as a dedicated module within the original registry. In addition to supporting and promoting research, the I-CAH Registry acts as an international tool for benchmarking of clinical care and it does this through the collection of standardised data for specific projects. Surveillance of novel therapies in the field of CAH can also be achieved via global collaborations. Its robust governance ensures adherence to the international standards for rare disease registries. Rare disease registries such as the I-CAH Registry are important tools for all stakeholders involved in the care of people with CAH.
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| http://dx.doi.org/10.1111/cen.14961 | DOI Listing |
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