Multiple OsteochondromaPJMOENCT07839637
Survey on Multiple Osteochondromas and Enchondromatoses During the Transition From Paediatric Care to Adult Care
An observational study of Multiple Osteochondroma and Enchondromatosis, run by Istituto Ortopedico Rizzoli at 1 site in Italy.
Trial summary
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. Read more about this study
- Who is it for?
- Ages 18 years and olderHealthy volunteers can take part
- Conditions the study is for
- Multiple Osteochondroma, Enchondromatosis
- How many people
- 91 participants
- Where
- 1 siteItaly
- Study dates
- 24 Nov 2025to 18 Sep 2026
- Phase
- Observational
- Are there results?
- None posted in the registry
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 18 years and older
- All sexes
- Healthy volunteers accepted
- Adult, Older adult
Study population: Individuals with enchondromatoses or multiple osteochondromas.
Who may be able to join
- Adult subjects (≥ 18 years) affected by multiple osteochondromas or enchondromatoses.
Who cannot join
- Subjects not affected by multiple osteochondromas or enchondromatoses.
- Minors
Trial locations and contacts
1 site in 1 country.
About this study
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.
Read the detailed description
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.
- Conditions
- Multiple Osteochondroma, Enchondromatosis
- Medical subject headings
- Exostoses, Multiple Hereditary, Enchondromatosis
What is being measured
The primary outcome is the main question the study is designed to answer.
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
Measured: Baseline, at the completion of the online questionnaire
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted24 Sep 2026
- Study start24 Nov 2025
- Primary completion24 Jan 2026
- Study completion18 Sep 2026
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Multiple OsteochondromaStudies of the same condition, open and under way.
- More trials run by Istituto Ortopedico RizzoliThe sponsor's other registered studies.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Cohort
- Time perspective
- Prospective
- Enrolment
- 91 participants (actual)
Sponsor and investigators
- Lead sponsor
- Istituto Ortopedico Rizzoli
- Sponsor type
- University, hospital or other
- Responsible party
- Principal investigator, Luca Sangiorgi, Istituto Ortopedico Rizzoli
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT07839637
- Sponsor's protocol ID
- 563/2025/Oss/IOR
- Acronym
- PJMOE
- Status last verified
- Sep 2026
- First submitted
- 16 Dec 2025
- Last updated
- 24 Sep 2026
- Results posted
- No
- Data monitoring committee
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
Study at a glance
From the registry record, last updated by the sponsor on 24 Sep 2026. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Survey on Multiple Osteochondromas and Enchondromatoses During the Transition From Paediatric Care to Adult Care
- ClinicalTrials.gov ID
- NCT07839637
- Acronym / sponsor ID
- PJMOE / 563/2025/Oss/IOR
- Conditions
- Multiple Osteochondroma, Enchondromatosis
- Study type
- Observational
- Recruitment status
- Completed
- Enrolment
- 91 participants (actual)
- Lead sponsor
- Istituto Ortopedico RizzoliUniversity, hospital or other
- Study start
- 24 Nov 2025 (actual)
- Primary completion
- 24 Jan 2026 (actual)
- Study completion
- 18 Sep 2026 (actual)
- First posted
- 24 Sep 2026 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
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.
Detailed description
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.
Study design
- Observational model
- Cohort
- Time perspective
- Prospective
Who may qualify
- Ages
- 18 years and older
- Sex
- All
- Healthy volunteers
- Accepted
- Age groups
- Adult, Older adult
- Study population
- Individuals with enchondromatoses or multiple osteochondromas.
Key inclusion criteria (1 listed)
- Adult subjects (≥ 18 years) affected by multiple osteochondromas or enchondromatoses.
Key exclusion criteria (2 listed)
- Subjects not affected by multiple osteochondromas or enchondromatoses.
- Minors
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Primary outcome
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
Results and safety
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 24 Sep 2026.
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part. This study is not recruiting at the moment.
The record lists no contact. Use the official record to reach the sponsor.
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Multiple Osteochondroma and Enchondromatosis, run by Istituto Ortopedico Rizzoli at 1 site in Italy.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 1 inclusion and 2 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: finished, as of the sponsor's last update on 24 Sep 2026. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in Italy. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
How can a doctor refer a patient or contact the research team?
The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Self reported experience of transition from paediatric to adult care (time frame: Baseline, at the completion of the online questionnaire). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 24 Sep 2026.