Survey on Multiple Osteochondromas and Enchondromatoses During the Transition From Paediatric Care to Adult Care

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.

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Key information

Conditions

Multiple Osteochondroma Bone Diseases Bone Diseases, Developmental Congenital, Hereditary, and Neonatal Diseases and Abnormalities Enchondromatosis Exostoses Exostoses, Multiple Hereditary Genetic Diseases, Inborn Hyperostosis Musculoskeletal Diseases Neoplasms Neoplasms by Histologic Type Neoplasms, Bone Tissue Neoplasms, Connective Tissue Neoplasms, Connective and Soft Tissue Neoplastic Syndromes, Hereditary Osteochondrodysplasias Osteochondroma Osteochondromatosis

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

IRCCS Istituto Ortopedico Rizzoli

Bologna, 40136, Italy

About this study

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.

Who can participate

Healthy volunteers accepted: Yes

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

Adult subjects (≥ 18 years) affected by multiple osteochondromas or enchondromatoses.

Exclusion criteria

Subjects not affected by multiple osteochondromas or enchondromatoses.
Minors

Treatment and study plan

Primary outcomes

Self reported experience of transition from paediatric to adult care

Time frame: Baseline, at the completion of the online questionnaire

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

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Sponsors and collaborators

Lead sponsor

Istituto Ortopedico Rizzoli

Other

Registry information

Acronym: PJMOE

Important dates

Study start: 2025
Primary completion: 2026
Study completion: 2026
First posted: Sep 24, 2026
Registry last updated: Sep 24, 2026

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

Published trials that share one or more normalized conditions with this study.

Completed