NCT03812055

Brief Summary

The purpose of this study is to evaluate the effect of small molecule therapy in primary cells derived from patients with lysosomal storage disease. The study will focus on activity of small molecules, in terms of measurements enzymes activity and level of substrates accumulations. Also, the effects of small molecules on cell function, including autophagy-lysosomal pathways, metabolism, mitochondrial function and immune reaction will be investigated.

Trial Health

43
At Risk

Trial Health Score

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

Trial has exceeded expected completion date
Enrollment
50

participants targeted

Target at P25-P50 for all trials

Timeline
Completed

Started Jul 2018

Geographic Reach
1 country

1 active site

Status
unknown

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

July 6, 2018

Completed
7 months until next milestone

First Submitted

Initial submission to the registry

January 18, 2019

Completed
4 days until next milestone

First Posted

Study publicly available on registry

January 22, 2019

Completed
1.4 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

July 1, 2020

Completed
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

July 1, 2020

Completed
Last Updated

January 22, 2019

Status Verified

January 1, 2019

Enrollment Period

2 years

First QC Date

January 18, 2019

Last Update Submit

January 18, 2019

Conditions

Outcome Measures

Primary Outcomes (5)

  • Effect on enzyme activity

    To evaluate the effect of small molecules on level of enzyme activity in primary cells derived from patients using fluorometric enzyme assays.

    24 months

  • Effect on substrate accumulation

    To evaluate the effect of small molecules on heparin sulfate accumulation and substrate accumulation in primary cells derived from patients using techniques like ELISA and mass spectrometry

    24 months

  • Effect on autophagy-lysosomal pathway

    To evaluate the effect of small molecules on autophagy-lysosomal functions in primary cells derived from patients using commercially available assays

    24 months

  • Effect on mitochondrial functions

    To evaluate the effect of small molecules on energy metabolism and mitochondrial functions in primary cells derived from patients using commercially available assay kits

    24 months

  • Effect on immune and inflammatory response

    Examine the immune and inflammatory response to treatment with small molecules using flow cytometry based immunophenotyping

    24 months

Study Arms (2)

LSD

Subjects diagnosed or suspected to have any of the following lysosomal storage diseases: Gaucher disease, Fabry disease, Pompe disease, Mucopolysaccharidoses.

Control

Subjects with no known lysosomal storage disorder

Eligibility Criteria

Sexall
Healthy VolunteersYes
Age GroupsChild (0-17), Adult (18-64), Older Adult (65+)
Sampling MethodNon-Probability Sample
Study Population

Patients diagnosed or suspected of having a lysosomal storage disorder and family members of diagnosed patients will be recruited. Informed consent will be obtained prior to the execution of any research procedures.

You may qualify if:

  • Subjects with
  • confirmed diagnosis of any lysosomal storage disorder
  • family members with history of lysosomal storage disorders

You may not qualify if:

  • Subjects excluded from the study include those who:
  • present with severe cognitive deficits impairing decision making
  • are unable to or for whom it is medically unsafe to withdraw from their current medications, such as subjects on SSRI s and other psychoactive drugs. The subjects on SSRIs may be included in the study only with an approval from the prescribing physician to discontinue their medications temporarily for the study.
  • are pregnant or nursing. All women of child bearing potential will undergo a pregnancy test.
  • have a history of neurologic conditions such as stroke or any focal brain lesion that may result in parkinonian manifestations. Individuals with such MRI findings will be excluded from the study.

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (1)

LDRTC

Fairfax, Virginia, 22030, United States

RECRUITING

Related Links

MeSH Terms

Conditions

Lysosomal Storage Diseases

Condition Hierarchy (Ancestors)

Metabolism, Inborn ErrorsGenetic Diseases, InbornCongenital, Hereditary, and Neonatal Diseases and AbnormalitiesMetabolic DiseasesNutritional and Metabolic Diseases

Study Officials

  • Margarita M Ivanova, PhD

    LDRTC

    PRINCIPAL INVESTIGATOR
  • Ozlem Goker-Alpan, MD

    LDRTC

    PRINCIPAL INVESTIGATOR
  • Renuka Limgala, PhD

    LDRTC

    PRINCIPAL INVESTIGATOR

Central Study Contacts

Margarita M Ivanova, PhD

CONTACT

Uyensa Beese

CONTACT

Study Design

Study Type
observational
Observational Model
CASE ONLY
Time Perspective
PROSPECTIVE
Sponsor Type
OTHER
Responsible Party
SPONSOR

Study Record Dates

First Submitted

January 18, 2019

First Posted

January 22, 2019

Study Start

July 6, 2018

Primary Completion

July 1, 2020

Study Completion

July 1, 2020

Last Updated

January 22, 2019

Record last verified: 2019-01

Locations