For this purpose, our team has developed a patient-reported registry focusing on MBD, as well as a multi-center database for the longitudinal clinical monitoring of patients with GLB1-related dysostosis, and the biobanking of biological samples is currently being implemented by the team at the University of British Columbia https://clinicaltrials.gov/ct2/show/NCT04320329. Here, GLB1 is linked to dysostosis.