The aim of the present study is to obtain long term follow-up in patients with osteofibrous dysplasia, to assess natural history of the disease, late results of treatment and in particular the potential and risk of progression to adamantinoma.
Who can participate
Sex
ALL
See this in plain English?
AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
Inclusion Criteria:
* Male and female patients treated at Rizzoli Institute from 01 Jan 1943 to 31 Dic 2011
* Diagnosis of osteofibrous dysplasia pathologically confirmed
* Written informed consent prior to any study-specific analysis and/or data collection
Exclusion Criteria:
* Patients with histological diagnosis different from osteofibrous dysplasia
Questions worth asking your doctor
Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.
1Since this trial has already been completed and was studying the natural history of osteofibrous dysplasia over the long term, would my doctor be able to share or access any findings from this research that might help inform decisions about my own case?
2This study was specifically looking at the relationship between osteofibrous dysplasia and adamantinoma — a related but more aggressive condition — so what signs or features should we be monitoring for that might suggest my condition is evolving in that direction?
3Because this was a long-term follow-up study rather than a treatment trial, does it provide any new evidence about whether watchful waiting versus active treatment tends to lead to better outcomes for someone with my specific presentation?
4The trial examined results of treatment as one of its primary goals — based on what's known from studies like this one, what treatment approaches would my doctor currently consider most appropriate for my situation, and are there alternatives we should discuss before deciding on anything?
5Since this disease is rare and this study was designed to better understand its natural course, does my doctor think it would be worth seeking a second opinion at a center that specializes in bone tumors, where clinicians may have been involved in or seen the results of research like this?
Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
Questions for the trial coordinator
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.
What they're measuring
1
Osteofibrous Dysplasia (Kempson-Campanacci's disease): Long Term Follow-up Study on Natural History, Results of Treatment and Relationship with Adamantinoma