ClinicalTrials.gg
TerminatedNCT03321604KINDREDUpdated Feb 24, 2021

Kidney Information Network for Disease Research and Education

An observational study in ESRD, Fabry Disease and Rare Diseases, sponsored by Massachusetts General Hospital. Terminated at 1 site in United States. Open to participants aged 18 Years to 65 Years. Per ClinicalTrials.gov, last updated 2021-02-24.

Sponsored by Massachusetts General Hospital · Observational

Why this study was terminated
Poor recruitment
Study type
Observational
Model
Cohort
Time perspective
Prospective
Enrollment
338
Ages
18 Years to 65 Years
Sex
All
01

Where this study stands

Counted across the records on this site · 2026-11-13

Among 12 studies in Kidney Failure, Chronic by Massachusetts General Hospital — 2 open to participants now, 2 under way, none of them phase 3. Kidney Failure, Chronic · Massachusetts General Hospital.

Started
2018
the only one that year
Observational
4 of 12
2 open now
Registered
9th of 12
by date

Among the 12 studies in Kidney Failure, Chronic by Massachusetts General Hospital, this one is the only one that started in 2018, is one of 4 observational ones, and was the 9th registered.

Kidney Failure, Chronic

2,109 studies on the registry are indexed under Kidney Failure, Chronic; 273 are open to participants now.

Browse Kidney Failure, Chronic studies →

Open to participants now

2 of the 12 studies in Kidney Failure, Chronic by Massachusetts General Hospital are open now, in 1 country. Recruiting first, the newest first:

By country, each count listing its studies:

All 2 open studies →

Where they have run

Who these studies take

Of the 169 Kidney Failure, Chronic studies recruiting now, 109 (64%) set no upper age limit and 32 (19%) stop at 75 or younger; 18 take children under 18; 22 take healthy volunteers.

This study: 18 Years to 65 Years · all sexes · no healthy volunteers.

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02

Study 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.

Read the 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.

03

Conditions studied

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

Keywords

  • Hemodialysis
  • Kidney
  • Dialysis
  • Kindred
  • Fabry
  • Massachusetts General Hospital
04

Who can participate

Ages eligible
18 Years to 65 Years
Sexes eligible
All
Accepts healthy volunteers
No
Sampling method
Probability sample

Study population

Adults receiving dialysis

Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.

Inclusion criteria

  • Adults between 18 and 65 with ESRD undergoing dialysis.

Exclusion criteria

Exclusion Criteria:

  • Kidney unlikely to be Fabry disease; those with a diagnosis that is clinically or biochemically proven not to be Fabry disease.
Terms in these criteria, in plain language(1)

Underlined terms in the criteria open these too. Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.

Biopsy and archival tissue

A biopsy takes a small piece of tissue to examine. “Archival tissue” is a sample already taken, for example at diagnosis, and kept by the hospital.

Whether a stored sample will do depends on when it was taken, how much there is and what the study needs. Ask whether the study accepts your stored sample or needs a new biopsy.

05

Study design

Observational model
Cohort
Time perspective
Prospective
Enrollment
338 participants (actual)
Target follow-up
1 Day
Patient registry
Yes
Biospecimen retention
Samples with dna
06

What researchers measure

Primary outcomes

  1. Genetically determined Fabry disease prevalence amongst a heterogenous patient population with end-stage renal disease on dialysis in the US not previously known to have Fabry disease.

    Time frame: 5 years

Secondary outcomes

  1. Differences in patient characteristics of dialysis patients diagnosed with Fabry disease vs. dialysis patients who do not have Fabry disease.

    Time frame: 5 years

  2. Differences in patient characteristics of individuals diagnosed with Fabry disease initiating dialysis after 2013 vs. patients with Fabry disease who started dialysis before 2003.

    Time frame: 5 years

07

Study locations

1 site
  • Massachusetts General Hospital
    Boston, Massachusetts 02214, United States
08

References and documents

Related links

Individual participant data

Plan to share: No

09

Timeline

Tracking since Sep 25, 2026
ElapsedEstimatedEstimated, not yet reached

Ran from Jan 2018 to primary completion in Nov 2019, 22 months.

How these figures are worked out, and which studies are left out of them.

Registered
Oct 23, 2017
First posted
Oct 25, 2017
StartActual
Jan 1, 2018
Primary completionActual
Nov 21, 2019
CompletionActual
Nov 21, 2019
Last update
Feb 24, 2021
What these dates mean
Start.
When the first participant enrolled; while estimated, when the study expects to open to recruitment.
Primary completion.
When the last participant was examined or treated to collect data for the study's main question, its primary outcome. A study that stopped early gives the date its data collection stopped.
Completion.
When the last participant's last visit took place, for every outcome, secondary ones and side effects included: the end of the study. Often later than primary completion, sometimes the same day.
Actual and Est.
Actual means the registry says the date has happened. Est. (estimated) is a date the sponsor plans or expects. It can still move, and the sponsor is expected to change it to actual once it has passed.
No changes since tracking began. The registry record was last updated on Feb 24, 2021, before this site started recording changes on Sep 25, 2026. Its history is on ClinicalTrials.gov ↗
10

Registry details

Key details

Study ID
NCT03321604
Collaborators
Genzyme, a Sanofi Company, Scott and White Hospital & Clinic
Responsible party
Ravi Thadhani (Principal Investigator, Massachusetts General Hospital) — Principal investigator
First posted
Oct 25, 2017
Start date
Jan 1, 2018
Primary completion
Nov 21, 2019
Completion
Nov 21, 2019
Last update
Feb 24, 2021

Oversight

Data monitoring committee
No
FDA-regulated drug
No
FDA-regulated device
No
View the source record on ClinicalTrials.gov ↗

Not currently enrolling

This study is terminated, as verified in Feb 2021. You cannot join it, but the record below documents what was studied.

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Discussion

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