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Authors
Ali, Dalal S. https://orcid.org/0000-0002-5378-5548
Khan, Aliya A. https://orcid.org/0000-0003-3733-8956
Mirza, Reza D. https://orcid.org/0000-0002-0576-4208
Appelman-Dijkstra, Natasha M. https://orcid.org/0000-0001-5035-127X
Brandi, Maria Luisa https://orcid.org/0000-0002-8741-0592
Carpenter, Thomas O. https://orcid.org/0000-0003-1328-6768
Chaussain, Catherine https://orcid.org/0000-0002-3463-3936
Imel, Erik A. https://orcid.org/0000-0002-7284-3467
de Beur, Suzanne M. Jan https://orcid.org/0000-0002-9386-7732
Florenzano, Pablo https://orcid.org/0000-0001-5936-3146
Morrison, Archibald
Alrob, Hajar Abu https://orcid.org/0000-0001-7830-3237
Alexander, R. Todd https://orcid.org/0000-0001-7396-7894
Alsarraf, Farah https://orcid.org/0000-0001-9426-9702
Beck-Nielsen, Signe Sparre https://orcid.org/0000-0002-7561-9217
Biosse-Duplan, Martin https://orcid.org/0000-0001-9417-3970
Cohen-Solal, Martine https://orcid.org/0000-0002-8582-8258
Crowley, Rachel K. https://orcid.org/0000-0003-1472-4117
Dandurand, Karel https://orcid.org/0000-0003-1759-8419
Filler, Guido https://orcid.org/0000-0003-1891-6765
Fukumoto, Seiji https://orcid.org/0000-0003-3610-3469
Gagnon, Claudia https://orcid.org/0000-0001-9623-962X
Goodyer, Paul https://orcid.org/0000-0002-3442-1407
Grasemann, Corinna https://orcid.org/0000-0003-1793-4603
Grimbly, Chelsey https://orcid.org/0000-0002-9302-7741
Hussein, Salma https://orcid.org/0000-0002-7284-4822
Javaid, Muhammad K. https://orcid.org/0000-0001-7985-0048
Khan, Sarah https://orcid.org/0000-0003-3604-303X
Khan, Aneal https://orcid.org/0000-0001-8131-7947
Lehman, Anna https://orcid.org/0000-0003-0636-123X
Lems, Willem F. https://orcid.org/0000-0002-6885-3953
Lewiecki, E. Michael https://orcid.org/0000-0003-2026-9587
McDonnell, Ciara https://orcid.org/0000-0001-9414-5873
Morgante, Emmett https://orcid.org/0009-0009-9271-0379
Portale, Anthony A. https://orcid.org/0000-0003-2054-6898
Rhee, Yumie https://orcid.org/0000-0003-4227-5638
Siggelkow, Heide https://orcid.org/0000-0002-8366-8625
Tosi, Laura https://orcid.org/0000-0001-8827-9883
Ward, Leanne M. https://orcid.org/0000-0003-1557-9185
Guyatt, Gordon https://orcid.org/0000-0003-2352-5718
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Funding
Funding for this research was provided by:
Calcium Disorders clinic McMaster University
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Article History
Received: 3 October 2024
Accepted: 16 January 2025
First Online: 21 March 2025
Declarations
:
: Steering Committee: DSA: none; AAK: Speaker, advisory board (Alexion, Amgen); Speaker, advisory board, research funding (Ascendis); Advisory board, research funding (Takeda); Research funding (Amolyt, Calcilytix); RM: none; NMA: Kyowa Kirin, UCB and Amgen (Consulting & advisory boards), XLH-Network Netherlands (Patient Advisory Org), Kyowa Kirin, UCB (unrestricted research grant); MLB: Honoraria: Amgen, Bruno Farmaceutici, Calcilytix, Kyowa Kirin, UCB; Grants and/or speaker: Abiogen, Alexion, Amgen, Amolyt, Amorphical, Bruno Farmaceutici, CoGeDi, Echolight, Eli Lilly, Enterabio, Gedeon Richter, Italfarmaco, Kyowa Kirin, Menarini, Monte Rosa, SPA, Takeda, Theramex, UCB; Consultant: Aboca, Alexion, Amolyt, Bruno Farmaceutici, Calcilytix, Echolight, Kyowa Kirin, Personal Genomics, UCB; TOC: Consulting and advisory boards: Ultragenyx, Kyowa Kirin; Consulting: Viridian; Research support: Ultragenyx; Other roles: Assoc. Editor JBMR, President Ped Endo Soc, Author UpToDate (royalties), XLH-Network (Patient Advisory Org); CC: Institutional research contracts with Kyowa-Kirin and novonordisk; EAI: Ultragenyx (Research funding and consulting), Kyowa Kirin (research funding and consulting), Inozyme (consulting), Amgen (research funding); SJdB: participation in clinical trials and consulting for Ultragenyx and consulting for Kyowa Kirin; PF: Institutional Research Grants: Ultragenyx. Advisory Boards: Ultragenyx, Kyowa Kirin; AM: none; HAA: none; GG: none. Members of the IWG: RTA: Ardylex Inc. (Research grant), Ardylex Inc, Advicienne and Ultragenyx (Consultancy); FA: none; SSBN: Kyowa Kirin (Research grants/consultancy/speaker/ad. board), Inozymes (consultancy), Novo Nordisk (Consultancy); MBD: Kyowa Kirin (research grants, speaker fee), Alexion (speaker fee and advisory board); MCS: Kyowa Kirin (research grants, speaker fee); RKC: speaker and consultancy fees from Kyowa Kirin, advisory to UCB / Amgen; KD: Speaker: Amgen, Kyowa Kirin, Mantra Pharma; GF: Consultant: Kyowa Kirin, ProKidney, Ultragenyx, Alnylum, Speaker: ProKidney, Ultragenyx; SF: Kyowa Kirin (consulting); CG: Ascendis Pharma, Takeda and Shire (research funding); PG: none; CoG: Kyowa Kirin; Biomarin, Alexion, Merck, Novo Nordisk; ChG: Ultragenyx (unrestricted research grant, consultancy and advisory board), IPSEN, Alexion and Kyowa Kirin (consultancy); SH: none; MKJ: funding for consultancy and speaker fees from Kyowa Kirin unrelated to this manuscript; SK: Amgen: honoraria/advisory board, Sandoz Pharmaceuticals: honoraria/advisory board, PI for XLH disease monitoring program—funded by Ultragenyx, Co-investigator TransconPTH trial funded by Ascendis; AK: none; AL: Consulting (advisory boards): Sanofi-Genzyme, Horizon, Spark Therapeutics, Ultragenyx, Biomarin, Takeda-Shire, Amicus, Recordati, Alexion; Travel grant: Sanofi Genzyme; Research and education grants: Takeda, Sanofi, Amicus; WFL: Speakers fee/advisory Boards: UCB, Amgen, Galapagos, Pfizer; EML: Consulting: Amgen; Speaker: Amgen, Ascendis; Investigator: Amgen, Ardius, Ultragenyx; CM: Consultancy, Travel/Research Grants or Advisory boards— Kyowa Kirin, Ascendis Pharma, Pfizer, Novo Nordisk, Biomarin, Regeneron; EM: none; AAP: Kyowa Kirin (advisory board, speaker); YR: Speaker: Amgen, Dawoong; Investigator: Amgen, Kyowa Kirin, Dongguk, Dong-A, Daewoong; HS: Advisory boards and/or speaker fees: Amgen, Takeda, UCB, Kyowa Kirin, Merck/Serono, Alexion, Biomarin. Research grant: Takeda, Ascendis; LT: clinical trial fees from Ultragenyx, NIH and PCOR grants, committees member for the Osteogenesis Imperfecta Foundation, the American Orthopaedic Association and the FDA; LMW: supported by a Tier 1 (Senior) Research Chair in Pediatric Bone Disorders from the University of Ottawa and the Children’s Hospital of Eastern Ontario Research Institute; declares participation in clinical trials with Ultragenyx, and consultancy to Kyowa Kirin and Ultragenyx, and unrestricted educational grants from Ultragenyx and Kyowa Kirin (with funds to Dr. Ward’s institution).
