Extension Study of Protocol ENB-002-08 - Study of Asfotase Alfa in Infants and Young Children With Hypophosphatasia (HPP)

NCT ID: NCT01205152

Last Updated: 2019-03-13

Study Results

Results available

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Basic Information

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Recruitment Status

COMPLETED

Clinical Phase

PHASE2

Total Enrollment

10 participants

Study Classification

INTERVENTIONAL

Study Start Date

2009-04-30

Study Completion Date

2016-08-31

Brief Summary

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This clinical trial studied the long term safety and efficacy of asfotase alfa in infants and young children with infantile onset HPP who completed study ENB-002-08 (NCT00744042).

Partial funding for this study was provided by the Office of Orphan Product Development (OOPD).

Detailed Description

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Asfotase Alfa was formerly referred to as ENB-0040

Hypophosphatasia (HPP) is a life-threatening, genetic, and ultra-rare metabolic disease characterized by defective bone mineralization and impaired phosphate and calcium regulation that can lead to progressive damage to multiple vital organs, including destruction and deformity of bones, profound muscle weakness, seizures, impaired renal function, and respiratory failure. There are limited data available on the natural course of this disease over time, particularly in patients with the juvenile-onset form.

Conditions

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Hypophosphatasia

Study Design

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Allocation Method

NA

Intervention Model

SINGLE_GROUP

Primary Study Purpose

TREATMENT

Blinding Strategy

NONE

Study Groups

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asfotase alfa

An initial single intravenous (IV) infusion of 2 mg/kg asfotase alfa, followed by subcutaneous (SC) injections of 1 mg/kg asfotase alfa 3 times per week

Group Type EXPERIMENTAL

asfotase alfa

Intervention Type BIOLOGICAL

Interventions

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asfotase alfa

Intervention Type BIOLOGICAL

Other Intervention Names

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ENB-0040

Eligibility Criteria

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Inclusion Criteria

* Patient completed participation in ENB-002-08 (NCT00744042)
* Written informed consent by parent or other legal guardian prior to any study procedures being performed
* Parent or other legal guardian willing to comply with study requirements

Exclusion Criteria

* History of sensitivity to any of the constituents of the study drug
* Clinically significant disease that precludes study participation
* Enrollment in any study (other than ENB-002-08) involving an investigational drug, device, or treatment for HPP (e.g., bone marrow transplantation)
Minimum Eligible Age

24 Weeks

Maximum Eligible Age

42 Months

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Alexion Pharmaceuticals, Inc.

INDUSTRY

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Locations

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Alfred I. DuPont Hospital for Children

Wilmington, Delaware, United States

Site Status

St. John's Medical Research Institute

Springfield, Missouri, United States

Site Status

University of Nebraska Medical Center

Omaha, Nebraska, United States

Site Status

Vanderbilt University Medical Center

Nashville, Tennessee, United States

Site Status

St. Vincent Hospital

Green Bay, Wisconsin, United States

Site Status

Tawam Hospital

Al Ain City, Abu Dhabi Emirate, United Arab Emirates

Site Status

Royal Maternity Hospital, Royal Belfast Hospital for Sick Children

Belfast, Northern Ireland, United Kingdom

Site Status

Sheffield Children's Hospital

Sheffield, , United Kingdom

Site Status

Countries

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United States United Arab Emirates United Kingdom

References

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Padidela R, Yates R, Benscoter D, McPhail G, Chan E, Nichani J, Mughal MZ, Myer C 4th, Narayan O, Nissenbaum C, Wilkinson S, Zhou S, Saal HM. Characterization of tracheobronchomalacia in infants with hypophosphatasia. Orphanet J Rare Dis. 2020 Aug 6;15(1):204. doi: 10.1186/s13023-020-01483-9.

Reference Type DERIVED
PMID: 32762706 (View on PubMed)

Whyte MP, Simmons JH, Moseley S, Fujita KP, Bishop N, Salman NJ, Taylor J, Phillips D, McGinn M, McAlister WH. Asfotase alfa for infants and young children with hypophosphatasia: 7 year outcomes of a single-arm, open-label, phase 2 extension trial. Lancet Diabetes Endocrinol. 2019 Feb;7(2):93-105. doi: 10.1016/S2213-8587(18)30307-3. Epub 2018 Dec 14.

Reference Type DERIVED
PMID: 30558909 (View on PubMed)

Whyte MP, Rockman-Greenberg C, Ozono K, Riese R, Moseley S, Melian A, Thompson DD, Bishop N, Hofmann C. Asfotase Alfa Treatment Improves Survival for Perinatal and Infantile Hypophosphatasia. J Clin Endocrinol Metab. 2016 Jan;101(1):334-42. doi: 10.1210/jc.2015-3462. Epub 2015 Nov 3.

Reference Type DERIVED
PMID: 26529632 (View on PubMed)

Related Links

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http://www.hypophosphatasia.com

Hypophosphatasia Website

http://www.hypophosphatasia.com/hcp/

Hypophosphatasia Website for Healthcare Providers

http://www.softbones.org

US Hypophosphatasia Group (Soft Bones)

Other Identifiers

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FD-R-003745-03

Identifier Type: OTHER_GRANT

Identifier Source: secondary_id

ENB-003-08

Identifier Type: -

Identifier Source: org_study_id

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