NCT01363492

Brief Summary

The purpose of this study is to assess the safety of Replagal in children with Fabry disease who who have not previously been treated with enzyme replacement therapy (ERT).

Trial Health

87
On Track

Trial Health Score

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

Enrollment
15

participants targeted

Target at below P25 for phase_2

Timeline
Completed

Started May 2011

Geographic Reach
1 country

5 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

March 31, 2011

Completed
1 month until next milestone

Study Start

First participant enrolled

May 12, 2011

Completed
20 days until next milestone

First Posted

Study publicly available on registry

June 1, 2011

Completed
1.9 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

April 17, 2013

Completed
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

April 17, 2013

Completed
1.1 years until next milestone

Results Posted

Study results publicly available

May 20, 2014

Completed
Last Updated

June 9, 2021

Status Verified

May 1, 2021

Enrollment Period

1.9 years

First QC Date

March 31, 2011

Results QC Date

March 25, 2014

Last Update Submit

May 24, 2021

Conditions

Keywords

agalsidase alfaReplagalEnzyme Replacement Therapy

Outcome Measures

Primary Outcomes (6)

  • Number of Serious Adverse Event (SAE)

    Baseline to week 55

  • Number of Treatment Emergent Adverse Event (TEAE)

    Baseline to week 55

  • Development of IgG Anti-Agalsidase Alfa Antibody

    Reflects development of Anti-Agalsidase antibodies post baseline

    Baseline to Week 55

  • Change From Baseline in Heart Rate Variability Parameter SDNN

    Baseline to week 55

  • Change From Baseline in Heart Rate Variability Parameter rMSSD

    Baseline to week 55

  • Change From Baseline in Heart Rate Variability Parameter pNN50

    Baseline to week 55

Secondary Outcomes (4)

  • Change From Baseline in LVMI

    Baseline to week 55

  • Change From Baseline in MFS

    Baseline to week 55

  • Change From Baseline in Plasma Gb3

    Baseline to week 55

  • Change From Baseline in Urine Gb3

    Baseline to week 55

Study Arms (1)

Replagal 0.2 mg/kg every other week (EOW)

EXPERIMENTAL
Biological: Replagal (agalsidase alfa)

Interventions

0.2 mg/kg administered over 40 minutes every other week (EOW)

Also known as: agalsidase alfa
Replagal 0.2 mg/kg every other week (EOW)

Eligibility Criteria

Age7 Years - 17 Years
Sexall
Healthy VolunteersNo
Age GroupsChild (0-17)

You may qualify if:

  • Patients must meet all of the following criteria to be enrolled in this study.
  • All patients must be diagnosed with Fabry disease by the following criteria:
  • Male Patients: The patient is a hemizygous male with Fabry disease as confirmed by a deficiency of alfa-galactosidase A activity measured in serum, leukocytes, or fibroblasts or has a confirmed mutation of the alfa-galactosidase-A gene.
  • Female Patients: The patient is a heterozygous female with Fabry disease as confirmed by a mutation of the alfa-galactosidase A gene.
  • Note: If the diagnosis of Fabry disease is previously documented in the patient's medical record, screening tests do not need to be repeated.
  • The patient is 7 to \<18 years of age
  • The patient is ERT-naïve
  • Adequate general health (as determined by the Investigators) to undergo the specified phlebotomy regimen and protocol-related procedures and no safety or medical contraindications for participation
  • The minor child must assent to participate in the protocol and the parent(s) or legally authorized representative(s) must have voluntarily signed an Institutional Review Board/Independent Ethics Committee (IRB/IEC) approved informed consent form after all relevant aspects of the study have been explained and discussed with the child and the child's parent(s) or legally authorized representative(s)

You may not qualify if:

  • Patients who meet any of the following criteria will be excluded from the study.
  • Patient and/or the patient's parent(s) or legally authorized representative(s) are unable to understand the nature, scope, and possible consequences of the study
  • Patient is unable to comply with the protocol, eg, uncooperative with protocol schedule, refusal to agree to all of the study procedures, inability to return for evaluations, or is otherwise unlikely to complete the study, as determined by the Investigator or the medical monitor.
  • Otherwise unsuitable for the study, in the opinion of the Investigator.

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (5)

Emory Division of Medical Genetics

Decatur, Georgia, 30033, United States

Location

Duke University Medical Center

Durham, North Carolina, 27710, United States

Location

Baylor University Medical Center

Dallas, Texas, 75246, United States

Location

University of Utah Hospital

Salt Lake City, Utah, 84132, United States

Location

O & O Alpan LLC

Fairfax, Virginia, 22152, United States

Location

Related Publications (1)

  • Goker-Alpan O, Longo N, McDonald M, Shankar SP, Schiffmann R, Chang P, Shen Y, Pano A. An open-label clinical trial of agalsidase alfa enzyme replacement therapy in children with Fabry disease who are naive to enzyme replacement therapy. Drug Des Devel Ther. 2016 May 25;10:1771-81. doi: 10.2147/DDDT.S102761. eCollection 2016.

MeSH Terms

Conditions

Fabry Disease

Interventions

agalsidase alfa

Condition Hierarchy (Ancestors)

SphingolipidosesLysosomal Storage Diseases, Nervous SystemBrain Diseases, Metabolic, InbornBrain Diseases, MetabolicBrain DiseasesCentral Nervous System DiseasesNervous System DiseasesCerebral Small Vessel DiseasesCerebrovascular DisordersVascular DiseasesCardiovascular DiseasesGenetic Diseases, X-LinkedGenetic Diseases, InbornCongenital, Hereditary, and Neonatal Diseases and AbnormalitiesMetabolism, Inborn ErrorsLipidosesLipid Metabolism, Inborn ErrorsLysosomal Storage DiseasesMetabolic DiseasesNutritional and Metabolic DiseasesLipid Metabolism Disorders

Results Point of Contact

Title
Study Director
Organization
Shire

Study Officials

  • Study Director

    Takeda

    STUDY DIRECTOR

Publication Agreements

PI is Sponsor Employee
No
Restriction Type
OTHER
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

March 31, 2011

First Posted

June 1, 2011

Study Start

May 12, 2011

Primary Completion

April 17, 2013

Study Completion

April 17, 2013

Last Updated

June 9, 2021

Results First Posted

May 20, 2014

Record last verified: 2021-05

Locations