Current Patient Registries for HCH

EuRREB (European Registries for Rare Endocrine and Bone Conditions) is a European initiative that brings together patients, clinicians, researchers, and specialist centres to improve understanding, diagnosis, treatment, and long-term outcomes for people living with rare endocrine and skeletal disorders. It serves as the registry platform for the European Reference Networks (ERNs) Endo-ERN and ERN BOND, connecting experts across Europe who care for patients with rare conditions.

For the hypochondroplasia community, EuRREB provides an important opportunity to collect real-world clinical information from affected individuals across multiple countries. By gathering standardized data over time, the registry helps researchers better understand the natural history of hypochondroplasia, monitor health outcomes, identify unmet needs, and support the development of new treatments and standards of care. 

EuRREB is funded by the European Union through the EU Health Programme, which supports the development and operation of pan-European registries for rare endocrine, bone and mineral disorders. Through this funding, EuRREB provides a shared platform for data collection, research collaboration and knowledge exchange across the European Reference Networks Endo-ERN and ERN BOND.

CrescNet is one of the largest pediatric growth monitoring networks in Europe. Based at the University of Leipzig, Germany, it was established to support the continuous and long-term observation of children's growth and weight development through the collection and analysis of routine clinical data. The network brings together pediatricians, specialists, and researchers to improve the early detection of growth disorders and enhance the care of children with conditions affecting growth.

For families affected by hypochondroplasia (HCH), CrescNet provides an important resource for understanding growth patterns and monitoring development over time. By collecting anonymized measurements of height, weight, and head circumference from large numbers of children, the network helps clinicians compare individual growth trajectories with established reference data and identify unusual growth patterns at an early stage.