NCT00744042

Brief Summary

This clinical trial studies the safety and efficacy of asfotase alfa in infants and young children with infantile onset HPP.

Trial Health

90
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
11

participants targeted

Target at below P25 for phase_1

Timeline
Completed

Started Sep 2008

Geographic Reach
4 countries

10 active sites

Status
completed

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

First Submitted

Initial submission to the registry

August 27, 2008

Completed
2 days until next milestone

First Posted

Study publicly available on registry

August 29, 2008

Completed
3 days until next milestone

Study Start

First participant enrolled

September 1, 2008

Completed
1.7 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

May 1, 2010

Completed
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

May 1, 2010

Completed
1.4 years until next milestone

Results Posted

Study results publicly available

September 30, 2011

Completed
Last Updated

April 1, 2019

Status Verified

March 1, 2019

Enrollment Period

1.7 years

First QC Date

August 27, 2008

Results QC Date

May 15, 2011

Last Update Submit

March 28, 2019

Conditions

Keywords

HypophosphatasiaHPPBone DiseaseSoft BonesLow Alkaline Phosphatasegenetic metabolic disorderalkaline phosphatasetissue non-specific alkaline phosphatasericketsosteomalacia

Outcome Measures

Primary Outcomes (1)

  • Change in Rickets Severity From Baseline to Week 24, Based on Assessment of Skeletal Radiographs Using Radiologic Global Impression of Change (RGI-C)

    A 7-point RGI-C (Radiographic Global Impression of Change) score was used to rate change in rickets severity. Scores ranged from -3 (severe worsening of rickets) to +3 (complete healing of rickets). Only those patients with a minimum score of +2 indicating substantial healing of rickets) were considered "responders". Three pediatric radiologists not affiliated with the conduct of the study performed the ratings. Average scores were derived for each patient at each assessment.

    24 weeks

Secondary Outcomes (3)

  • Maximum Serum Concentration of Asfotase Alfa (Cmax)

    Study Week 1 (0 to 168 hours post-dose). Study Week 2 and Study Week 3 (0 to 48 hours post-dose)

  • Time at Maximum Serum Concentration of Asfotase Alfa (Tmax)

    Study Week 1 (0 to 168 hours post-dose). Study Week 2 and Study Week 3 (0 to 48 hours post-dose).

  • Area Under Serum Concentration-time Curve to Last Measurable Concentration of Asfotase Alfa (AUCt)

    Study Week 1 (0 to 168 hours post-dose). Study Week 2 and Study Week 3 (0 to 48 hours post-dose).

Study Arms (1)

asfotase alfa

OTHER

asfotase alfa

Biological: asfotase alfa

Interventions

asfotase alfaBIOLOGICAL
Also known as: Asfotase Alfa was formerly referred to as ENB-0040, Human Recombinant Tissue Nonspecific Alkaline Phosphatase Fusion Protein
asfotase alfa

Eligibility Criteria

AgeUp to 36 Months
Sexall
Healthy VolunteersNo
Age GroupsChild (0-17)

You may qualify if:

  • Legal guardian(s) must provide informed consent prior to any study procedures
  • Documented diagnosis of severe HPP as indicated by:
  • Total serum alkaline phosphatase at least 3 standard deviations (SD) below the mean for age
  • Plasma pyridoxal 5'-phosphate (PLP) at least 4 times the upper limit of normal
  • Radiographic evidence of HPP (hypophosphatasia), characterized by:
  • Flared and frayed metaphyses
  • Severe, generalized osteopenia
  • Widened growth plates
  • One or more HPP-related findings:
  • History or presence of:
  • Non-traumatic post-natal fracture
  • Delayed fracture healing
  • History of elevated serum calcium
  • Functional craniosynostosis with decreased head circumference growth
  • Nephrocalcinosis
  • +7 more criteria

You may not qualify if:

  • History of sensitivity to any of the constituents of the study drug
  • Current or prior clinically significant cardiovascular, endocrinologic, hematologic, hepatic, immunologic, metabolic, infectious, urologic, pulmonary, neurologic, dermatologic, renal condition and/or other major disease which, in the opinion of the investigator, precludes study participation
  • Treatment with an investigational drug within 1 month prior to the start of study drug administration
  • Current enrollment in any other study involving an investigational new drug, device or treatment for HPP (e.g., bone marrow transplantation)
  • Low serum calcium, phosphate or 25(OH) vitamin D
  • Current evidence of a treatable form of rickets
  • Prior treatment with bisphosphonate

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (10)

Arkansas Children's Hospital

Little Rock, Arkansas, 72202, United States

Location

Alfred I. duPont Hospital for Children

Wilmington, Delaware, 19803, United States

Location

St. John's Hospital

Springfield, Missouri, 65804, United States

Location

University of Nebraska Medical Center, Munroe-Meyer Institute

Omaha, Nebraska, 68114, United States

Location

Vanderbilt Children's Hospital

Nashville, Tennessee, 37232, United States

Location

St. Vincent Hospital

Green Bay, Wisconsin, 54301, United States

Location

The University of Manitoba Health Sciences Centre

Winnipeg, Manitoba, R3A 1S1, Canada

Location

Tawam-John Hopkins Hospital

Al Ain City, Abu Dhabi Emirate, United Arab Emirates

Location

Sheffield Children's Hospital

Sheffield, England, S10 2TH, United Kingdom

Location

Royal Belfast Hospital for Sick Children

Belfast, Northern Ireland, United Kingdom

Location

Related Publications (5)

  • Millan JL, Narisawa S, Lemire I, Loisel TP, Boileau G, Leonard P, Gramatikova S, Terkeltaub R, Camacho NP, McKee MD, Crine P, Whyte MP. Enzyme replacement therapy for murine hypophosphatasia. J Bone Miner Res. 2008 Jun;23(6):777-87. doi: 10.1359/jbmr.071213.

    PMID: 18086009BACKGROUND
  • Drake MT, Khosla S. Bone-targeted replacement therapy for hypophosphatasia. J Bone Miner Res. 2008 Jun;23(6):775-6. doi: 10.1359/jbmr.080305. No abstract available.

    PMID: 18318644BACKGROUND
  • 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.

  • 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.

  • Whyte MP, Greenberg CR, Salman NJ, Bober MB, McAlister WH, Wenkert D, Van Sickle BJ, Simmons JH, Edgar TS, Bauer ML, Hamdan MA, Bishop N, Lutz RE, McGinn M, Craig S, Moore JN, Taylor JW, Cleveland RH, Cranley WR, Lim R, Thacher TD, Mayhew JE, Downs M, Millan JL, Skrinar AM, Crine P, Landy H. Enzyme-replacement therapy in life-threatening hypophosphatasia. N Engl J Med. 2012 Mar 8;366(10):904-13. doi: 10.1056/NEJMoa1106173.

Related Links

MeSH Terms

Conditions

HypophosphatasiaBone DiseasesRicketsOsteomalacia

Interventions

asfotase alfa

Condition Hierarchy (Ancestors)

Metal Metabolism, Inborn ErrorsMetabolism, Inborn ErrorsGenetic Diseases, InbornCongenital, Hereditary, and Neonatal Diseases and AbnormalitiesMetabolic DiseasesNutritional and Metabolic DiseasesMusculoskeletal DiseasesBone Diseases, MetabolicCalcium Metabolism DisordersVitamin D DeficiencyAvitaminosisDeficiency DiseasesMalnutritionNutrition Disorders

Results Point of Contact

Title
Alexion Pharma GmbH
Organization
Alexion Pharma GmbH

Publication Agreements

PI is Sponsor Employee
No
Restriction Type
LTE60
Restrictive Agreement
Yes

Study Design

Study Type
interventional
Phase
phase 1
Allocation
NA
Masking
NONE
Purpose
TREATMENT
Intervention Model
SINGLE GROUP
Sponsor Type
INDUSTRY
Responsible Party
SPONSOR

Study Record Dates

First Submitted

August 27, 2008

First Posted

August 29, 2008

Study Start

September 1, 2008

Primary Completion

May 1, 2010

Study Completion

May 1, 2010

Last Updated

April 1, 2019

Results First Posted

September 30, 2011

Record last verified: 2019-03

Locations