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Gaucher DiseaseNCT02605603

SRT in Comparison to ERT on Immune Aspects and Bone Involvement in Gaucher Disease

An observational study of Gaucher Disease, run by Lysosomal and Rare Disorders Research and Treatment Center, Inc. at 1 site in United States.

Unknown status

Status not confirmed. The sponsor has not verified this record for over two years, so it may be out of date.

Official record
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Trial summary

This project is expected to elucidate role of different therapeutic interventions: SRT in comparison to ERT in influencing immune aspects of GD pathology, as well as bone involvement. Read more about this study

Who is it for?
Ages 18 years and older
Conditions the study is for
Gaucher Disease
How many people
30 participants
Where
1 siteUnited States
Study dates
May 2015to May 2020
Phase
Observational
Are there results?
None posted in the registry

Key requirements

Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.

  • Ages 18 years and older
  • All sexes
  • No healthy volunteers
  • Adult, Older adult

Study population: Patients with Gaucher disease, and are currently on Enzyme replacement therapy (ERT) or on Substrate reduction therapy (SRT).

Who may be able to join

  • Confirmed diagnosis of Gaucher disease
  • Subjects on SRT using Cerdelga ( must fulfil the pharmacogenomics criteria for Cerdelga)

Who cannot join

  • Unconfirmed diagnosis of Gaucher disease
  • Subject or guardian unable to provide consent
  • Any chronic immunosuppressive state or therapy

Trial locations and contacts

1 site in 1 country.

United States1 site
  • O&O Alpan, LLC

    Fairfax, Virginia, 22030

Other trials in United States

About this study

Official title: Effect of Two Different Therapeutic Interventions: SRT in Comparison to ERT on Immune Aspects and Bone Involvement in Gaucher Disease

This project is expected to elucidate role of different therapeutic interventions: SRT in comparison to ERT in influencing immune aspects of GD pathology, as well as bone involvement.

Read the detailed description

Introduction

Lysosomes are small, cytoplasmic organelles that contain several acid hydrolase enzymes. These enzymes break down foreign materials and cellular debris allowing the lysosomes to act as recycling centers for the cells. Following DNA transcription, lysosomal enzymes are produced in the endoplasmic reticulum and targeted to lysosomes by specific recognition markers. If one of the enzymes is absent or if its function is diminished due to either an altered amino acid sequence of the protein or defective intracellular trafficking, the macromolecules metabolized by the specific enzyme will gradually accumulate in the lysosomes. Abnormal substrate storage leads to cellular dysfunction followed by cell death ultimately manifesting as tissue damage and organ failure.

Gaucher disease (GD) is a lysosomal storage disorder caused by a genetic deficiency of the lysosomal enzyme glucocerebrosidase. GD leads to accumulation of glycosphingolipids in various tissue systems, most notably in cells of mononuclear phagocyte system resulting in a wide range of heterogenous phenotypic effects in the affected individuals. Clinical manifestations of GD affect across multiple organs ranging from immune dysregulations, splenomegaly to bone crises and osteoporosis. Carrier frequency is 1 in 200 for the general population with an incidence of 1 in 60,000. However, in certain populations, such as Ashkenazi Jews, the incidence could be as high as 1 in 1,000.

Background and Significance

Macrophage directed Enzyme replacement therapy (ERT) has been the most accepted form of treatment for GD. However there are still unmet needs in treating all aspects of GD using ERT. As an alternative to ERT, substrate reduction therapy (SRT) was developed using glucosylceramide synthase inhibitors. While ERT is devised to target macrophages which are the most affected cell types, SRT is meant to reach broad cell types. It is vital to know how each form of therapy acts on different cell types and tissues while choosing to administer either form of treatment on individual patients. Our preliminary immune phenotyping results reveal that patients with GD undergoing treatment manifest various kinds of persistent immune dysregulations. Information regarding which type of therapy works better in controlling these dysregulations would give valuable information in treatment options. In-depth analysis on peripheral blood would shed light as to how various components of immune system are being affected with either form of treatment.

The investigators will address this issue from two aspects: a) Evaluate cytokine profile from plasma to see if the reported pain correlates with a particular cytokine profile. b) Assess if the extent of bone disease could be predicted or explained using markers from peripheral blood in relation to pathways involved in bone remodeling. The findings from individual GD patients would be compared in parallel to their disease severity and bone density findings.

In this study, the effects of ERT vs SRT will be closely monitored and compared, particularly keeping in mind immunological aspects as well as bone remodeling. For this, in-depth immunophenotyping of patients being administered these forms of therapy to evaluate various immune cell types including T-, B- and NK cell, monocyte and dendritic cell fractions from peripheral blood using multi-parametric flow cytometry will be performed. In addition to these the investigators will like to assess the macrophage activation using assays for secreted CCL18 and chitotriosidase as well as study the cytokine profile from plasma to evaluate their contribution to bone pain/crisis. In order to investigate if the extent of bone remodeling could be predicted or explained using markers from peripheral blood, expression of RANK/RANKL pathway components would be assessed on relevant immune cell types. Cell based in vitro assays would be developed and utilized to study differentiation and macrophage function. The results from individual GD patients would be compared in parallel to their disease severity and bone density findings. This proposal is highly significant and innovative, because this study is expected to provide insights into how each form of therapy influences the immune dysregulations, macrophage function and their effects on bone crisis in Gaucher patients undergoing ERT vs SRT. Insight regarding which type of therapy works better in controlling these dysregulations would give valuable information in treatment options.

Conditions
Gaucher Disease
Keywords
Gaucher Type 1, Gaucher Type 2, Gaucher Type 3
Medical subject headings
Gaucher Disease

What is being measured

The primary outcome is the main question the study is designed to answer.

  1. Delineate T-, B- and NK cell fractions as well as dendritic cell and monocyte numbers and compare between patients undergoing ERT vs. SRT.

    We will utilize multicolour flow cytometry using cell surface markers to perform detailed analysis of various components of immune system. Activation of monocytes/macrophages per se would be measured using secreted cytokines like CCL18 and chitotriosidase from plasma.

    Measured: 2 Years

Secondary outcomes (1)
  1. Comparative effects on skeletal involvement in individual Gaucher patients correlates with their disease severity and bone involvement.

    Bone mineral deposition will be examined by Alizarin Red staining.

    Measured: 2 Years

Timeline

From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.

  1. First posted16 Nov 2015 (estimated)
  2. Study startMay 2015
  3. Primary completionFeb 2020 (estimated)
  4. Study completionMay 2020 (estimated)

Resources

More details

For doctors and researchers: how the study is designed, who runs it, and its registry IDs.

Study design
Study type
Observational
Observational model
Cohort
Time perspective
Prospective
Enrolment
30 participants (estimated)
IDs, dates and publications
ClinicalTrials.gov ID
NCT02605603
Sponsor's protocol ID
15-LDRTC-02
Status last verified
Aug 2019
First submitted
9 Sep 2015
Last updated
13 Aug 2019
Results posted
No
Data monitoring committee
No
Individual data sharing
Undecided

Questions about this trial

What is this clinical trial studying?

An observational study of Gaucher Disease, run by Lysosomal and Rare Disorders Research and Treatment Center, Inc. at 1 site in United States.

The full registered description is in the About this study section and the official record.

Who may be eligible to take part?

The sponsor lists 2 inclusion and 3 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.

Is this clinical trial currently recruiting?

The record says: status not confirmed, as of the sponsor's last update on 13 Aug 2019. Status can change between updates, so confirm with the study contact before making plans.

Where is the study taking place?

The record lists 1 site in United States. Whether a site is taking part right now should be confirmed with that site. See every site.

What are the possible benefits and risks?

They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.

Are results available for this study?

Results are not available in the source record.

How can a doctor refer a patient or contact the research team?

The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.

What does the primary outcome measure?

Delineate T-, B- and NK cell fractions as well as dendritic cell and monocyte numbers and compare between patients undergoing ERT vs. SRT. (time frame: 2 Years). It is what the study was designed to measure, not a finding.

Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?

No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.

How often is this information updated?

AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 13 Aug 2019.

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