NCT01203826

Brief Summary

This clinical trial studies the long term safety and efficacy of asfotase alfa in children with HPP who completed Study ENB-006-09 (NCT00952484).

Trial Health

90
On Track

Trial Health Score

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

Enrollment
12

participants targeted

Target at below P25 for phase_2

Timeline
Completed

Started Apr 2010

Longer than P75 for phase_2

Geographic Reach
2 countries

2 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

Study Start

First participant enrolled

April 1, 2010

Completed
6 months until next milestone

First Submitted

Initial submission to the registry

September 15, 2010

Completed
1 day until next milestone

First Posted

Study publicly available on registry

September 16, 2010

Completed
5.7 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

June 1, 2016

Completed
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

June 1, 2016

Completed
1.2 years until next milestone

Results Posted

Study results publicly available

July 26, 2017

Completed
Last Updated

March 13, 2019

Status Verified

March 1, 2019

Enrollment Period

6.2 years

First QC Date

September 15, 2010

Results QC Date

June 27, 2017

Last Update Submit

March 11, 2019

Conditions

Keywords

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

Outcome Measures

Primary Outcomes (1)

  • Skeletal Radiograph Evaluation Using a Qualitative Radiographic Global Impression of Change (RGI-C) Scale Compared to Baseline (Pre-treatment) in Study ENB-006-09.

    Evaluation of radiographic change in rickets severity (as assessed by skeletal radiographs of the hands/wrists and knees) from the Baseline of Study ENB-006-09 (NCT00952484) to the End of Study (EOS) visit in Study ENB-008-10 using an ordinal RGI-C scale score. The RGI-C is a 7-point rating scale that ranges from -3 (indicative of severe worsening of HPP associated rickets) to +3 (indicative of complete or near complete healing of HPP associated rickets). The time points will be pre-treatment (Baseline from Study ENB-006-09) to the last radiographic assessment in Study ENB-008-10, which represents at least 72 months of treatment.

    At least 72 months of treatment with asfotase alfa

Study Arms (1)

asfotase alfa

EXPERIMENTAL

asfotase alfa starting dose 3 mg/kg/week SC injection, increased to 6 mg/kg/week SC injection

Biological: Asfotase Alfa

Interventions

Asfotase AlfaBIOLOGICAL
Also known as: human recombinant tissue nonspecific alkaline phosphatase fusion protein
asfotase alfa

Eligibility Criteria

Age5 Years - 12 Years
Sexall
Healthy VolunteersNo
Age GroupsChild (0-17)

You may qualify if:

  • Compliant and satisfactory completion of Enobia-sponsored clinical trial ENB-006-09
  • 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

You may not qualify if:

  • Clinically significant disease that precludes study participation, in the Investigator's opinion
  • Treatment with an investigational drug other than asfotase alfa
  • Enrollment in any study (other than ENB-006-09) involving an investigational drug, device, or treatment for HPP
  • Prior treatment with bisphosphonates

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (2)

Shriners Hospital for Children

St Louis, Missouri, 63110, United States

Location

Children's Hospital Health Sciences Centre

Winnipeg, Manitoba, R3A 1S1, Canada

Location

Related Publications (2)

  • Simmons JH, Rush ET, Petryk A, Zhou S, Martos-Moreno GA. Dual X-ray absorptiometry has limited utility in detecting bone pathology in children with hypophosphatasia: A pooled post hoc analysis of asfotase alfa clinical trial data. Bone. 2020 Aug;137:115413. doi: 10.1016/j.bone.2020.115413. Epub 2020 May 14.

  • Whyte MP, Madson KL, Phillips D, Reeves AL, McAlister WH, Yakimoski A, Mack KE, Hamilton K, Kagan K, Fujita KP, Thompson DD, Moseley S, Odrljin T, Rockman-Greenberg C. Asfotase alfa therapy for children with hypophosphatasia. JCI Insight. 2016 Jun 16;1(9):e85971. doi: 10.1172/jci.insight.85971.

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
Director of Clinical Trials
Organization
Alexion Pharmaceuticals, Inc.

Publication Agreements

PI is Sponsor Employee
No
Restriction Type
LTE60
Restrictive Agreement
Yes

Study Design

Study Type
interventional
Phase
phase 2
Allocation
NA
Masking
NONE
Purpose
TREATMENT
Intervention Model
SINGLE GROUP
Sponsor Type
INDUSTRY
Responsible Party
SPONSOR

Study Record Dates

First Submitted

September 15, 2010

First Posted

September 16, 2010

Study Start

April 1, 2010

Primary Completion

June 1, 2016

Study Completion

June 1, 2016

Last Updated

March 13, 2019

Results First Posted

July 26, 2017

Record last verified: 2019-03

Locations