NCT04008849

Brief Summary

A follow-up study to evaluate the safety and clinical outcomes of patients with inherited metabolic disorders (IMD) who have undergone hematopoietic stem cell transplantation (HSCT) with MGTA-456

Trial Health

57
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Trial Health Score

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

Enrollment
3

participants targeted

Target at below P25 for all trials

Timeline
Completed

Started May 2019

Geographic Reach
1 country

1 active site

Status
terminated

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

Trial Relationships

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Study Timeline

Key milestones and dates

Study Start

First participant enrolled

May 21, 2019

Completed
2 days until next milestone

First Submitted

Initial submission to the registry

May 23, 2019

Completed
1 month until next milestone

First Posted

Study publicly available on registry

July 5, 2019

Completed
1.3 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

October 8, 2020

Completed
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

October 8, 2020

Completed
Last Updated

March 15, 2021

Status Verified

March 1, 2021

Enrollment Period

1.4 years

First QC Date

May 23, 2019

Last Update Submit

March 10, 2021

Conditions

Keywords

Inherited Metabolic DisordersHematopoietic Stem Cell TransplantMGTA-456Umbilical Cord Blood TransplantHurler SyndromeCerebral AdrenoleukodystrophyGloboid Cell LeukodystrophyMetachromatic Leukodystrophy

Outcome Measures

Primary Outcomes (10)

  • Incidence of related adverse events

    2 years

  • Incidence of serious adverse events

    2 years

  • Incidence of late hematological graft failure

    2 years

  • Incidence of chronic graft versus host disease

    2 years

  • Overall survival

    2 years

  • Event-free survival

    2 years

  • Change in cALD Neurologic Function Score over time

    2 years

  • Proportion of subjects without gadolinium enhancement on MRI over time

    2 years

  • Alpha-iduronidase blood enzyme level (nmol/hr/mg) in Hurler patients

    2 years

  • Very long chain fatty acid blood level (ug/mL) in cALD patients

    2 years

Study Arms (1)

Subjects treated with MGTA-456

MGTA-456 is an investigational expanded CD34+ cell therapy

Other: Safety and efficacy assessments

Interventions

Long term safety and clinical outcomes

Subjects treated with MGTA-456

Eligibility Criteria

AgeUp to 16 Years
Sexall
Healthy VolunteersNo
Age GroupsChild (0-17)
Sampling MethodNon-Probability Sample
Study Population

Subjects with an inherited metabolic disorder (IMD) that were treated with MGTA-456

You may qualify if:

  • An Institutional Review Board (IRB)/Independent Ethics Committee-approved written informed consent form must be signed and dated by the patient or legal guardian. Study assents will also be prepared for children and adolescents to review when applicable.
  • Patient completed an IMD study in the MGTA-456 program and was administered MGTA-456 for HSCT.

You may not qualify if:

  • Patients enrolled in an IMD study in the MGTA-456 program who did not receive MGTA-456 or were withdrawn from the core study.

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (1)

University of Minnesota

Minneapolis, Minnesota, 55455, United States

Location

Biospecimen

Retention: SAMPLES WITH DNA

Peripheral blood mononuclear cells \& plasma

MeSH Terms

Conditions

Mucopolysaccharidosis ILeukodystrophy, Globoid CellLeukodystrophy, Metachromatic

Interventions

Safety

Condition Hierarchy (Ancestors)

MucopolysaccharidosesCarbohydrate Metabolism, Inborn ErrorsMetabolism, Inborn ErrorsGenetic Diseases, InbornCongenital, Hereditary, and Neonatal Diseases and AbnormalitiesLysosomal Storage DiseasesMucinosesConnective Tissue DiseasesSkin and Connective Tissue DiseasesMetabolic DiseasesNutritional and Metabolic DiseasesHereditary Central Nervous System Demyelinating DiseasesBrain Diseases, Metabolic, InbornBrain Diseases, MetabolicBrain DiseasesCentral Nervous System DiseasesNervous System DiseasesSphingolipidosesLysosomal Storage Diseases, Nervous SystemLeukoencephalopathiesDemyelinating DiseasesLipidosesLipid Metabolism, Inborn ErrorsLipid Metabolism DisordersSulfatidosis

Intervention Hierarchy (Ancestors)

Accident PreventionAccidentsPublic HealthEnvironment and Public Health

Study Officials

  • Paul J Orchard, MD

    University of Minnesota

    PRINCIPAL INVESTIGATOR

Study Design

Study Type
observational
Observational Model
COHORT
Time Perspective
PROSPECTIVE
Sponsor Type
INDUSTRY
Responsible Party
SPONSOR

Study Record Dates

First Submitted

May 23, 2019

First Posted

July 5, 2019

Study Start

May 21, 2019

Primary Completion

October 8, 2020

Study Completion

October 8, 2020

Last Updated

March 15, 2021

Record last verified: 2021-03

Data Sharing

IPD Sharing
Will not share

Locations