NCT03321604

Kidney Information Network for Disease Research and Education

Kidney Information Network for Disease Research and Education (KINDRED)

• Status: Terminated
• Phase: —
• Study type: Observational
• Enrollment: 338 (actual)
• Sponsor: Massachusetts General Hospital · Academic / Other
• Sex: All
• Age: 18 Years – 65 Years
• Healthy volunteers: Not accepted

Summary

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.

Detailed 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.

Conditions

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

Timeline

• Start date: 2018-01-01
• Primary completion: 2019-11-21
• Completion: 2019-11-21
• First posted: 2017-10-25
• Last updated: 2021-02-24

Locations

1 site across 1 country: United States