Kidney Information Network for Disease Research and Education
| Status: | Recruiting |
|---|---|
| Conditions: | Renal Impairment / Chronic Kidney Disease, Renal Impairment / Chronic Kidney Disease, Women's Studies, Hematology, Metabolic |
| Therapuetic Areas: | Hematology, Nephrology / Urology, Pharmacology / Toxicology, Reproductive |
| Healthy: | No |
| Age Range: | 18 - 65 |
| Updated: | 4/17/2018 |
| Start Date: | January 11, 2018 |
| End Date: | January 2024 |
| Contact: | Ravi I Thadhani, MD, MPH |
| Email: | rthadhani@partners.org |
| Phone: | 6177241207 |
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.
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.
KINDRED is a prospective observational cohort study that will enroll up to 10,100 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.
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.
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.
We found this trial at
1
site
185 Cambridge Street
Boston, Massachusetts 02114
Boston, Massachusetts 02114
617-724-5200
Principal Investigator: Sahir Kalim, MD, MMSc
Phone: 617-643-6718
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