NCT06065605

Brief Summary

The purpose of this research is to collect biological samples (urine) to develop assays for immune biomarkers to possibly in the future be able to screen subjects with Fabry disease and be able to understand better progression of nephropathy in Fabry disease and predict nephropathy in Fabry disease.

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
40

participants targeted

Target at P25-P50 for all trials

Timeline
Completed

Started Sep 2023

Geographic Reach
1 country

2 active sites

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

First Submitted

Initial submission to the registry

September 11, 2023

Completed
3 days until next milestone

Study Start

First participant enrolled

September 14, 2023

Completed
20 days until next milestone

First Posted

Study publicly available on registry

October 4, 2023

Completed
1.8 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

July 12, 2025

Completed
2 months until next milestone

Study Completion

Last participant's last visit for all outcomes

September 12, 2025

Completed
Last Updated

October 4, 2023

Status Verified

September 1, 2023

Enrollment Period

1.8 years

First QC Date

September 11, 2023

Last Update Submit

September 29, 2023

Conditions

Keywords

Urine collectionbiomarkersCKDEarly detection

Outcome Measures

Primary Outcomes (1)

  • identify urinary inflammatory biomarkers associated with nephropathy in Fabry disease, Units pg/ml

    IL-1β, TNF-α, IL-6, Il-4, IL-8, Il-10, Il-12, Il-18, MCP1, RANTES, BAFF, APRIL, TGF-β1, INF-gamma, and PAI-1will be measured in urine.

    through study completion, an average of 2 years

Secondary Outcomes (1)

  • Identify biomarkers of renal glomerular function, tubular injury and endothelial dysfunction. Units pg/ml

    through study completion, an average of 2 years

Study Arms (4)

Fabry patients without clinical evidence of nephropathy

No deterioration of kidney function.

Fabry patients with clinical evidence of nephropathy

Deterioration of kidney function.

Naïve Fabry patients

These patients have no received treatment.

Healthy controls

Not diagnosed with Fabry disease.

Eligibility Criteria

Age18 Years - 80 Years
Sexall
Healthy VolunteersYes
Age GroupsAdult (18-64), Older Adult (65+)
Sampling MethodNon-Probability Sample
Study Population

There is no particular study population being investigated. Only patient with Fabry disease and healthy controls from across the world will be enrolled in the study.

You may qualify if:

  • Male and Female subject is greater than 18 but not older than 80 years.
  • Subject willing to sign the informed consent and/or assent.
  • Confirmed diagnosis of Fabry disease based on deficient α-Gal A enzymatic activity and molecular analysis demonstrating pathogenic variants in the GLA gene.

You may not qualify if:

  • Any other known genetic condition associated with CKD.
  • Evidence of hepatitis B or C infections or other chronic infectious diseases,
  • Pregnancy or breastfeeding.
  • Any other chronic condition, as per PI's discretion, that makes the subject ineligible.

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (2)

Lysosomal & Rare Disorders Research & Treatment Center

Rockville, Maryland, 20853, United States

RECRUITING

Lysosomal & Rare Disorders Research & Treatment Center

Fairfax, Virginia, 22030, United States

RECRUITING

Biospecimen

Retention: SAMPLES WITH DNA

Urine sample.

MeSH Terms

Conditions

Fabry Disease

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

Central Study Contacts

Ozlem Goker-Alpan, M.D.

CONTACT

Margarita Ivanova, Ph.D.

CONTACT

Study Design

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

Study Record Dates

First Submitted

September 11, 2023

First Posted

October 4, 2023

Study Start

September 14, 2023

Primary Completion

July 12, 2025

Study Completion

September 12, 2025

Last Updated

October 4, 2023

Record last verified: 2023-09

Data Sharing

IPD Sharing
Will not share

Locations