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Kidney Information Network for Disease Research and Education (KINDRED)

Mass General Brigham logo

Mass General Brigham

Status

Terminated

Conditions

Genetic Diseases, X-Linked
Fabry Disease
Kidney Diseases
ESRD
End Stage Renal Disease
Rare Diseases

Study type

Observational

Funder types

Other
Industry

Identifiers

NCT03321604
2016P002671

Details and patient eligibility

About

In this study, Investigators will conduct a prospective cohort study of dialysis patients by collecting research-quality information on patient characteristics, comorbid diseases and laboratory markers used in routine practice, as well as novel biochemical markers and genetic data. Investigators will utilize data from the cohort to test the independent relationship between biochemical and genetic markers and Fabry disease and other rare diseases.

Full description

KINDRED is a prospective observational cohort study that will enroll up to 5,000 dialysis patients throughout the United States with and without known diagnosis of Fabry disease but at risk for Fabry disease (e.g., unknown cause of renal disease, young male, initiating dialysis without a kidney biopsy, etc).This tissue repository will allow for genetic screening of a geographically diverse population, assist in identification of rare diseases in ESRD, and collect research-quality information on risk factors and outcomes from an ethnically heterogeneous population of dialysis patients. In this study, Investigators will use a novel method of performing research in this population by leveraging the internet to enhance and accelerate recruitment of potential subjects to participate in a genetic screening/tissue repository protocol.

Enrollment

338 patients

Sex

All

Ages

18 to 65 years old

Volunteers

No Healthy Volunteers

Inclusion criteria

  • Adults between 18 and 65 with ESRD undergoing dialysis.

Exclusion criteria

  • Kidney biopsy unlikely to be Fabry disease; those with a diagnosis that is clinically or biochemically proven not to be Fabry disease.

Trial contacts and locations

1

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Data sourced from clinicaltrials.gov

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