Researchers track rare bone disease over years in observational study
NCT ID NCT04783428
First seen Jun 27, 2026 · Last updated Jun 27, 2026
Summary
This study follows 23 people with tumor-induced osteomalacia (TIO), a rare condition where tumors cause weak bones. The goal is to see how well the drug burosumab works over time and to monitor any tumor changes. Participants continue their usual care, and no new treatments are given.
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Study facts
What this study's own registry entry says, in plain language.
- Participants
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23 people
The number who actually took part.
- Started
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Jan 2022
- Expected to finish
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Feb 2032
An estimate. End dates often move.
- Lead sponsor
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A company
The lead sponsor is a pharmaceutical, biotech, or medical-device company.
Who can take part
This study's own entry requirements. Only the study team can say for certain whether you qualify.
Who is studied
May include patients who have undergone complete tumor resection and continue to have biochemical/clinical evidence of disease, patients with tumor identified, or patients in whom causative tumor has not been identified and who have been diagnosed with TIO based on biochemical/clinical symptom profile. Patients may be treated with burosumab, or phosphate and active vitamin D metabolites/analogs, as prescribed by a physician, or may be untreated, at any time during the TIO DMP.
- Ages
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Children (under 18), adults (18 to 64) and older adults (65 and over)
- Sex
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Anyone
- Healthy volunteers
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Not accepted
This study is not open to healthy volunteers. The entry requirements below say who it is open to.
Show the full entry requirements Hide the full entry requirements
Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.
Inclusion Criteria: * Have a clinical diagnosis of TIO based on the presence of an underlying PMT (confirmed by imaging) AND/OR historical documentation. Note: For adult patients with TIO in whom the causative PMT has never been located, and all pediatric patients, documented evidence of negative genetic testing for other hereditary hypophosphatemic disorders is necessary * For patient safety, all participating female patients of child-bearing potential must be willing to have pregnancy tests prior to certain assessments performed as part of the DMP * Be willing to provide access to prior medical records including tumor pathology reports and biopsy slides, imaging, biochemical, and diagnostic, medical, and surgical history data, if available * Be willing and able to provide informed consent after the nature of the study has been explained, and prior to any research-related procedures * Be willing and able to comply with the study visit schedule and study procedures Exclusion Criteria: * Have a clinical diagnosis of TIO deemed to be caused by a tumor other than a PMT * Serious medical or psychiatric comorbidity that, in the opinion of the Investigator, would present a concern for patient safety or compromise the ability to provide consent or comply with the study visit schedule and study procedures * Less than 1 year of life expectancy (for any cause) in the opinion of the Investigator * Concurrent enrollment in a clinical trial without prior approval from the TIO DMP Sponsor * Undergoing treatment with burosumab for an unapproved indication
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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
Locations
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IDIM - Instituto de Diagnóstico e Investigaciones Metabólicas
Buenos Aires, Argentina
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Indiana University
Bloomington, Indiana, 47405, United States
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Johns Hopkins University
Baltimore, Maryland, 21218, United States
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University of Virginia
Charlottesville, Virginia, 22908, United States
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Vanderbilt University Medical Center
Nashville, Tennessee, 37235, United States
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Yale University
New Haven, Connecticut, 06520, United States