X-linked Hypophosphatemia Disease Monitoring Program
Active, not recruiting · NCT03651505
Conditions: X-linked Hypophosphatemia, Hypophosphatemic Rickets
At a glance
- Research payments reported, 2025
- $2.2M
- U.S. investigators named
- 23
- Sites paid
- 25
- Planned or actual enrollment
- 782
About the trial
- Sponsor
- Ultragenyx Pharmaceutical Inc (with Kyowa Kirin Co., Ltd.)
- Tested
- No intervention (other)
- Dates
- Started 2018-07-16; completion 2032-12
- Results posted
- Not yet
The objectives of this observational study are to characterize XLH disease presentation and progression and to assess long-term effectiveness and safety of burosumab.
From ClinicalTrials.gov, last updated 2026-08-28. Full record, eligibility and contacts (opens in a new tab)
Industry funding
Ultragenyx Pharmaceutical Inc. reported $2.2M in research payments for this study in 2025 (122 payments).
Products named: Crysvita
Research payments usually go to hospitals, universities and research sites to run a study, not to the investigators personally. A payment is not evidence of wrongdoing.
U.S. investigators named on this study
- Ambika P. Ashraf, M.D. Pediatric Endocrinology · Birmingham, AL
- Michael E. Gottschalk, M.D., PH.D. Pediatric Endocrinology · San Diego, CA
- Anthony A. Portale, M.D. Pediatrics · San Francisco, CA
- Anna Ryabets-lienhard, D.O. Emergency Medicine · Los Angeles, CA
- Bradley P. Dixon, MD Pediatric Nephrology · Aurora, CO
- Thomas O. Carpenter, MD Pediatric Endocrinology · New Haven, CT
- Erik A. Imel, MD Pediatric Endocrinology · Indianapolis, IN
- Ingrid A. Holm, MD Medical Genetics · Boston, MA
- Janet L. Crane, M.D. Pediatrics · Baltimore, MD
- Gary S. Gottesman, MD Medical Genetics · Saint Louis, MO
- Thomas J. Weber, MD Endocrinology & Diabetes · Durham, NC
- Sasigarn A. Bowden Pediatric Endocrinology · Columbus, OH
- Steven W. Ing, MD Endocrinology & Diabetes · Columbus, OH
- Halley Wasserman, M.D. Pediatric Endocrinology · Cincinnati, OH
- Michael A. Levine, MD Pediatric Endocrinology · Philadelphia, PA
- Kathryn Dahir, MD Endocrinology & Diabetes · Nashville, TN
- Jill H. Simmons, MD Pediatric Endocrinology · Nashville, TN
- David F. Rodriguez, M.D. Medical Genetics · Houston, TX
- Laila S. Tabatabai, MD Endocrinology & Diabetes · Houston, TX
- Eric O. Gyuricsko, M.D. Pediatric Endocrinology · Norfolk, VA
- Suzanne Jan De Beur, M.D. Endocrinology & Diabetes · Charlottesville, VA
- Ian A. Glass Medical Genetics · Seattle, WA
- Neil J. Paloian, MD Pediatric Nephrology · Madison, WI
Clinicians the company named as principal investigators in its Open Payments reports.
Sites paid to run it
- Yale University $535,781
- UCSF Langley Porter Psychiatric Hospital and Clinics, CA $332,158
- Vanderbilt University Medical Center, TN $324,117
- Children's Hosp of Los Angeles, CA $211,796
- Johns Hopkins University $128,561
- Indiana University $82,421
- University of Virginia Medical Center, VA $77,125
- Duke University Medical Center $75,714
- The Methodist Hospital Research Institute $53,589
- Seattle Children's Hospital, WA $52,344
- Cincinnati Children's Hospital Medical Center, OH $52,027
- Children's Hospital Colorado, CO $47,815
- The Research Institute at Nationwide Childrens Hospital $44,854
- Children's Hospital of Philadelphia, PA $37,629
- Regents of the University of California $33,290
- Washington University $24,322
- University of Alabama Hospital, AL $21,941
- Board of Regents of the University of Wisconsin System $18,068
- Boston Children's Hospital, MA $17,498
- The Children's Hospital of Philadelphia $13,897
- The University of Texas Health $6,637
- The Ohio State University $5,224
- Children's Specialty Group $4,860
- Seattle Childrens Hospital $3,684
Sources: CMS Open Payments research payments (program year 2025) and ClinicalTrials.gov, U.S. National Library of Medicine.