Last reviewed · How we verify
NCT05181839
A Study to Describe the Lived Experience of XLH for Adolescents at End of Skeletal Growth
trial testing Burosumab in X-Linked Hypophosphatemia in 25 participants. Completed in 22 May 2024.
22 May 2024
Quick facts
| Lead sponsor | Kyowa Kirin Pharmaceutical Development Ltd |
|---|---|
| Status | Completed |
| Study type | OBSERVATIONAL |
| Enrollment | 25 |
| Start date | 24 November 2021 |
| Primary completion | 22 May 2024 |
| Estimated completion | 22 May 2024 |
| Sites | 14 locations across France, Netherlands, United Kingdom, Germany, Spain |
Drugs / interventions tested
- Burosumab (BUROSUMAB) — full drug profile →
Conditions studied
- X-Linked Hypophosphatemia — all drugs for X-Linked Hypophosphatemia →
Sponsor
Kyowa Kirin Pharmaceutical Development Ltd — full company profile →
Who can join
Adults 12 to 17, any sex, with X-Linked Hypophosphatemia. Patients with the condition only — healthy volunteers not accepted.
Sponsor's own description
An observational, prospective, mixed-methods study involving the integration of quantitative and qualitative data exploring the lived experience of burosumab-treated adolescents with XLH at the end of skeletal growth.
Publications & conference data
3 peer-reviewed publications reference this trial (live from Europe PMC):
-
A patient-centred and multi-stakeholder co-designed observational prospective study protocol: Example of the adolescent experience of treatment for X-linked hypophosphataemia (XLH).
Saraff V, Boot AM, Linglart A, Semler O, et al · · 2024 · cited 3× · PMID 38241270 · DOI 10.1371/journal.pone.0295080 -
The lived experience of adolescents with X-linked hypophosphataemia treated with burosumab at end of skeletal growth: a mixed-methods analysis.
Saraff V, Sancho PA, Bacchetta J, Boot AM, et al · · 2026 · cited 1× · PMID 41860923 · DOI 10.1371/journal.pone.0344902 -
Abstracts Presented at the 32nd Annual Conference of the International Society for Quality of Life Research.
· 2026 · PMID 42024210 · DOI 10.1186/s41687-026-01004-5
Verify or expand the search:
- PubMed search for NCT05181839
- Europe PMC full search
- ASCO Meeting Library
- ESMO Meeting Library
- bioRxiv preprints
- medRxiv preprints
- Google Scholar
Related trials
Other trials of Burosumab
Trials testing the same drug.
- NCT05509595 — Burosumab for Fibroblast Growth Factor-23 Mediated Hypophosphatemia in Fibrous Dysplasia · Phase 2 · completed
- NCT04695860 — Anti-FGF23 (Burosumab) in Adult Patients With XLH · Phase 3 · completed
- NCT04188964 — Study to Assess the Safety, Tolerability, Pharmacokinetics and Efficacy of Burosumab in Patients Less Than 1 Year of Age · Phase 1, PHASE2 · completed
- NCT03920072 — Study of the Anti-FGF23 Antibody, Burosumab, in Adults With XLH · Phase 3 · completed
- NCT03581591 — Open Label Trial Assessing Safety and Efficacy of Burosumab (KRN23), in a Patient With ENS and Hypophosphatemic Rickets · Phase 3 · completed
Other recruiting trials for X-Linked Hypophosphatemia
Currently open trials in the same condition.
- NCT03745521 — Study of Longitudinal Observation for Patient With X-linked Hypophosphatemic Rickets/Osteomalacia in Collaboration With · active not recruiting
- NCT03193476 — Registry for Patients With X-Linked Hypophosphatemia · recruiting
Other Kyowa Kirin Pharmaceutical Development Ltd trials
Trials by the same sponsor.
- NCT05455931 — Real World Observational Study of Poteligeo in Adult Patients With MF and SS (PROSPER) · active not recruiting
- NCT04819490 — A UK Multicentre, Health-Related Quality of Life Study for Children and Adolescents With XLH · completed
- NCT04188964 — Study to Assess the Safety, Tolerability, Pharmacokinetics and Efficacy of Burosumab in Patients Less Than 1 Year of Age · Phase 1, PHASE2 · completed
- NCT03920072 — Study of the Anti-FGF23 Antibody, Burosumab, in Adults With XLH · Phase 3 · completed
- NCT03638440 — Real World Observational Study of Naloxegol for Patients With Cancer Pain Diagnosed With OIC. · completed
Verify against primary sources
- ClinicalTrials.gov — authoritative US registry record
- WHO ICTRP — international registry index
- EU Clinical Trials Register
- Sponsor press releases (Google)
- Trial protocol + status: ClinicalTrials.gov NCT05181839 (US National Library of Medicine, public domain)
- Publications: Europe PMC API search by NCT ID, retrieved 10 June 2026
- Drug + disease cross-links: matched in real time against Drug Landscape's normalised drug + company + condition tables
- Sponsor: as reported to ClinicalTrials.gov by Kyowa Kirin Pharmaceutical Development Ltd
- Last refreshed: 4 September 2024
Drug Landscape aggregates and links these public records for informational use only. Always verify against the primary source before clinical or regulatory decisions. Canonical URL: https://druglandscape.com/trial/NCT05181839.
Primary sources · FDA · ClinicalTrials.gov · EMA · SEC EDGAR · ChEMBL · Wikidata · full sourcing