An observational study in Multiple Osteochondroma and Enchondromatosis, sponsored by Istituto Ortopedico Rizzoli. Completed at 1 site in Italy. Open to participants aged 18 Years and older, including healthy volunteers. Per ClinicalTrials.gov, last updated 2026-09-24.
Sponsored by Istituto Ortopedico Rizzoli · Observational
This prospective observational study aims to understand the transition experiences and unmet needs of patients living with multiple osteochondromas or enchondromatoses during the paediatric to adult care, in order to produce a Patient Journey by collecting data through an online survey.
The transition from paediatric to adult care represents a crucial phase for patients living with rare skeletal diseases, yet knowledge of patient experiences during this period remains limited. This study focuses on multiple osteochondromas and enchondromatoses, all rare bone conditions, providing guidance for patients, caregivers, and healthcare providers to improve care continuity and outcomes.
This study aims to recruit approximately 50 adult participants (≥18 years) across European countries. Participants will complete an online survey on their transition experience from preadolescence through adulthood. Results will be synthesized into a Patient Journey which will map the disease progression and the patient needs.
The research is conducted by the Department of Rare Skeletal Disorders at Istituto Ortopedico Rizzoli, Bologna, Italy, one of the reference centres, as well as the coordinating centre, of ERN BOND, the European Reference Network for rare BONe Diseases (https://ernbond.eu/), since its creation in 2017.
Istituto Ortopedico Rizzoli is the lead sponsor of 304 studies on the registry; 103 are open to participants now.
Counted across the registry records on this site, refreshed daily.
Individuals with enchondromatoses or multiple osteochondromas.
Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
Exclusion Criteria:
Self reported experience of transition from paediatric to adult care
Investigate via self-reporting tool used to evaluate the clinical symptoms experienced by adult patients subjective experiences of the transition phase in order to develop a Patient Journey that highlights clinical and psycosocial needs, care and gaps
Time frame: Baseline, at the completion of the online questionnaire
Ran from Nov 2025 to primary completion in Jan 2026, 2 months.
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This study is completed, as verified in Sep 2026. You cannot join it, but the record below documents what was studied.
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Exostoses, Multiple Hereditary