Developing a standard dataset in the European registries for rare endocrine and bone conditions – a Melorheostosis dataset

by Jacqueline van der Blom | Jul 7, 2025 | Publication

We are pleased to share the publication of a new EuRREB article: “Developing a standard dataset in the European registries for rare endocrine and bone conditions – a Melorheostosis dataset”, now available in the Orphanet Journal of Rare Diseases on July 1, 2025.  Read...

New EuRREB Publication: Standardised Dataset for Melorheostosis

by Jacqueline van der Blom | Jul 7, 2025 | General

We are pleased to share the publication of a new EuRREB article: “Developing a standard dataset in the European registries for rare endocrine and bone conditions – a Melorheostosis dataset”, now available in the Orphanet Journal of Rare Diseases on July 1, 2025....

New EuRREB Publication: Standardised Dataset Natural History Studies in FD/MAS

by Jacqueline van der Blom | May 8, 2025 | General

EuRREB is proud to share the latest outcome of an international collaboration to improve research and care for patients with rare bone diseases. A new paper has been published describing the development of a core dataset for natural history studies in Fibrous...

New Module Launch: Langerhans Cell Histiocytosis (LCH)

by Jacqueline van der Blom | May 8, 2025 | General

We are excited to announce that the Langerhans Cell Histiocytosis (LCH) module is now live on the Core Registry platform! This condition-specific module activates automatically once a patient with LCH is entered into the system – making data collection seamless...

Developing a Standardised Dataset for Natural History Studies in Fibrous Dysplasia/McCune-Albright Syndrome

by Jacqueline van der Blom | May 8, 2025 | Publication

Background Fibrous dysplasia/McCune-Albright syndrome (FD/MAS) is a rare and complex condition caused by somatic variants in the GNAS gene, leading to a wide clinical spectrum. The diagnostic process and therapeutic pathways vary across centers, highlighting the need...