Like last week, I’m archiving material of interest to the XLH community that may disappear in the current destruction of government services. This time, it’s information from clinicaltrials.gov about ongoing research related to chronic hypophosphatemia. I’m giving the governmental link for the trials, for as long as the website is active, but also including a direct contact in case the site is down or stops being updated.
Registry in Europe: https://clinicaltrials.gov/study/NCT03193476?cond=XLH&aggFilters=status:not%20rec&rank=1 Contact: KKI-IMA-XLH-Registry@kyowakirin.com
French study on inflammation in patients on burosumab: https://clinicaltrials.gov/study/NCT06248632?cond=XLH&aggFilters=status:not%20rec&rank=2 Contact: Justine.bacchetta@chu-lyon.fr
Pediatric dental research in France: https://clinicaltrials.gov/study/NCT04872907?cond=XLH&aggFilters=status:not%20rec&rank=3 Contact: violaine.smail-faugeron@u-paris.fr
Research internationally into updated version of burosumab: https://clinicaltrials.gov/study/NCT06525636?cond=XLH&aggFilters=status:not%20rec&rank=5 Contact: KKD.Clintrial.82@kyowakirin.com
For ENPP1 patients: https://clinicaltrials.gov/study/NCT06739980?cond=XLH&aggFilters=status:not%20rec&rank=7 or https://clinicaltrials.gov/study/NCT06046820?cond=XLH&aggFilters=status:not%20rec&rank=8 Contact clinicaltrials@inozyme.com
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Please note that the author is a well-read patient, not a doctor, and is not offering medical or legal advice.
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