NCT02306720|Enrolling By Invitation
Registry of Patients With Hypophosphatasia
An Observational, Longitudinal, Prospective, Long-Term Registry Of Patients With Hypophosphatasia (HPP)
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An Observational, Longitudinal, Prospective, Long-Term Registry Of Patients With Hypophosphatasia (HPP)
Sponsor study identifier
observational
1,571
12 countries
66
Study Start
January 20, 2015
Actual (reported)Primary Completion
December 31, 2031
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Study Completion
December 31, 2031
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
In this prospective, observational, long term registry patients of all ages with a diagnosis of hypophosphatasia (HPP) are followed at participating sites in multiple countries.
Registry-reported information. Elapsed time and enrollment totals alone do not measure study progress or recruitment pace.
December 31, 2031
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
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Dates and qualifiers reported by the registry. Estimated dates do not confirm that a milestone has occurred.
November 26, 2014
Actual (reported)December 3, 2014
Actual (reported)January 20, 2015
Actual (reported)December 31, 2031
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
December 31, 2031
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Natural History Information
To collect information on the natural history of HPP from patients of all ages, including pediatric patients and adults with HPP, regardless of age at onset.
1 Year
Burden of Disease/Patient-reported Outcomes
Age-appropriate PRO data will be collected using instruments to asses below: Pain, Motor Capacity, Functional Status/Disability, including Activities of Daily Living (ADL), Quality of Life (QoL)
1 year
Characterize the epidemiology of the HPP population.
To characterize the epidemiology of the HPP population. Inclusion of all classifications of HPP is planned: pediatric-onset (perinatal-, infantile-, and juvenile-onset), adult-onset, benign perinatal, and odontohypophosphatasia.
1 year
Long-Term Safety and Effectiveness of Asfotase Alfa
To collect and evaluate long-term safety and effectiveness data in HPP patients who have/are receiving treatment with asfotase alfa.
1 year
Patients with Hypophosphatasia (HPP)
Research Site
Centennial, Colorado, 80112, United States
Research Site
Hartford, Connecticut, 06106, United States
Research Site
Tampa, Florida, 33606, United States
Research Site
Decatur, Georgia, 30033, United States
Research Site
Baltimore, Maryland, 21287, United States
Research Site
Boston, Massachusetts, 02111, United States
Research Site
Boston, Massachusetts, 02115, United States
Dahir KM, Seefried L, Kishnani PS, Petryk A, Hogler W, Linglart A, Martos-Moreno GA, Ozono K, Fang S, Rockman-Greenberg C. Clinical profiles of treated and untreated adults with hypophosphatasia in the Global HPP Registry. Orphanet J Rare Dis. 2022 Jul 19;17(1):277. doi: 10.1186/s13023-022-02393-8.
Dahir KM, Kishnani PS, Martos-Moreno GA, Linglart A, Petryk A, Rockman-Greenberg C, Martel SE, Ozono K, Hogler W, Seefried L. Impact of muscular symptoms and/or pain on disease characteristics, disability, and quality of life in adult patients with hypophosphatasia: A cross-sectional analysis from the Global HPP Registry. Front Endocrinol (Lausanne). 2023 Mar 27;14:1138599. doi: 10.3389/fendo.2023.1138599. eCollection 2023.
First Submitted
November 26, 2014
First Posted
December 3, 2014
Study Start
January 20, 2015
Actual (reported)Primary Completion
December 31, 2031
EstimatedSafety Study of Human Recombinant Tissue Non-Specific Alkaline Phosphatase Fusion Protein Asfotase Alfa in Adults With Hypophosphatasia (HPP)
Contact the study team to confirm eligibility.
Research Site
Minneapolis, Minnesota, 55454, United States
Research Site
Kansas City, Missouri, 64108, United States
Research Site
St Louis, Missouri, 63110, United States
Research Site
Hackensack, New Jersey, 07601, United States
Research Site
Mineola, New York, 11501, United States
Research Site
Durham, North Carolina, 27710, United States
Research Site
Cincinnati, Ohio, 45229, United States
Research Site
Columbus, Ohio, 43205, United States
Research Site
Pittsburgh, Pennsylvania, 15224, United States
Research Site
Nashville, Tennessee, 37212, United States
Research Site
Salt Lake City, Utah, 84112, United States
Research Site
Charlottesville, Virginia, 22903, United States
Research Site
Madison, Wisconsin, 53792, United States
Research Site
Clayton, Victoria, Australia
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Parkville, Victoria, Australia
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Herston, Australia
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South Brisbane, Australia
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Linz, Austria
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Winnipeg, Manitoba, Canada
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Oakville, Ontario, Canada
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Ottawa, Ontario, Canada
Research Site
Toronto, Ontario, M5G 2C4, Canada
Santander, 681003, Colombia
Research Site
Toulouse, Haute Garonne, France
Research Site
Lille, Nord, France
Research Site
Paris, Paris, France
Research Site
Poitiers, Vienne, France
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Lyon, France
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Paris, France
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Le Kremlin-Bicêtre, Île-de-France Region, France
Research Site
Bad Reichenhall, Bavaria, Germany
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Würzburg, Bavaria, Germany
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Bochum, North Rhine-Westphalia, Germany
Research Site
Düsseldorf, North Rhine-Westphalia, Germany
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Dresden, Saxony, Germany
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Berlin, Germany
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Cologne, Germany
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Giessen, Germany
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Homburg, Germany
Research Site
Mainz, Germany
Sesto Fiorentino, Firenze, Italy
Research Site
Milan, Milano, 20132, Italy
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Florence, Italy
Research Site
Pisa, Italy
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Rome, Italy
Research Site
San Giovanni Rotondo, Italy
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Lodz, Poland
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Warsaw, Poland
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Riyadh, Saudi Arabia
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Madrid, Spain
Research Site
Bristol, Avon, United Kingdom
Research Site
London, Greater London, United Kingdom
Leicester Royal Infirmary
Leicester, Leicestershire, LE1 5WW, United Kingdom
Research Site
Stanmore, Middlesex, United Kingdom
Research Site
Oxford, Oxfordshire, United Kingdom
Research Site
Sheffield, South Yorkshire, United Kingdom
Research Site
Newcastle upon Tyne, Tyne & Wear, United Kingdom
Research Site
Birmingham, West Midlands, United Kingdom
Research Site
Belfast, United Kingdom
Hogler W, Linglart A, Petryk A, Kishnani PS, Seefried L, Fang S, Rockman-Greenberg C, Ozono K, Dahir K, Martos-Moreno GA. Growth and disease burden in children with hypophosphatasia. Endocr Connect. 2023 Apr 25;12(5):e220240. doi: 10.1530/EC-22-0240. Print 2023 May 1.
Hogler W, Langman C, Gomes da Silva H, Fang S, Linglart A, Ozono K, Petryk A, Rockman-Greenberg C, Seefried L, Kishnani PS. Diagnostic delay is common among patients with hypophosphatasia: initial findings from a longitudinal, prospective, global registry. BMC Musculoskelet Disord. 2019 Feb 14;20(1):80. doi: 10.1186/s12891-019-2420-8.
Kishnani PS, Martos-Moreno GA, Linglart A, Petryk A, Messali A, Fang S, Rockman-Greenberg C, Ozono K, Hogler W, Seefried L, Dahir KM. Effectiveness of asfotase alfa for treatment of adults with hypophosphatasia: results from a global registry. Orphanet J Rare Dis. 2024 Mar 8;19(1):109. doi: 10.1186/s13023-024-03048-6.
Martos-Moreno GA, Rockman-Greenberg C, Ozono K, Petryk A, Kishnani PS, Dahir KM, Seefried L, Fang S, Hogler W, Linglart A. Clinical Profiles of Children with Hypophosphatasia prior to Treatment with Enzyme Replacement Therapy: An Observational Analysis from the Global HPP Registry. Horm Res Paediatr. 2024;97(3):233-242. doi: 10.1159/000531865. Epub 2023 Jul 13.
Seefried L, Dahir K, Petryk A, Hogler W, Linglart A, Martos-Moreno GA, Ozono K, Fang S, Rockman-Greenberg C, Kishnani PS. Burden of Illness in Adults With Hypophosphatasia: Data From the Global Hypophosphatasia Patient Registry. J Bone Miner Res. 2020 Nov;35(11):2171-2178. doi: 10.1002/jbmr.4130. Epub 2020 Aug 10.
Kishnani PS, Seefried L, Dahir KM, Martos-Moreno GA, Linglart A, Petryk A, Mowrey WR, Fang S, Ozono K, Hogler W, Rockman-Greenberg C. New insights into the landscape of ALPL gene variants in patients with hypophosphatasia from the Global HPP Registry. Am J Med Genet A. 2024 Nov;194(11):e63781. doi: 10.1002/ajmg.a.63781. Epub 2024 Jun 17.
Kishnani PS, Seefried L, Dahir KM, Martos-Moreno GA, Hogler W, Greenberg CR, Fang S, Petryk A, Mowrey WR, Linglart A, Ozono K. Disease burden by ALPL variant number in patients with non-life-threatening hypophosphatasia in the Global HPP Registry. J Med Genet. 2025 Mar 20;62(4):249-257. doi: 10.1136/jmg-2024-110383.
Tornero C, Martos-Moreno GA, Guanabens N, Florez H, Ribera A, Aguado P. Clinical characterization and impact of hypophosphatasia in Spain: An observational analysis of the Spanish cohort included in the Global HPP Registry. Med Clin (Barc). 2025 Nov;165(5):107120. doi: 10.1016/j.medcli.2025.107120. Epub 2025 Jul 25. English, Spanish.
Kishnani PS, Seefried L, Ozono K, Martos-Moreno GA, Rockman-Greenberg C, Fowler D, Burke LK, Mowrey WR, Rush ET, Ebeling PR, Hogler W, Linglart A, Fang S, Petryk A, Dahir KM. The Global Hypophosphatasia Registry: lessons learned from a decade of real-world data. Orphanet J Rare Dis. 2025 Nov 24;20(1):626. doi: 10.1186/s13023-025-04129-w.
Planned date reported by the registry; this milestone is not confirmed as achieved.
Study Completion
December 31, 2031
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Last Updated
September 4, 2026
Record last verified: 2026-09
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