Genetic Causes of FSGS, Nephrotic Syndrome, or Kidney Failure

NCT ID: NCT02194582

Last Updated: 2024-11-05

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

ACTIVE_NOT_RECRUITING

Total Enrollment

2050 participants

Study Classification

OBSERVATIONAL

Study Start Date

1996-06-30

Study Completion Date

2035-01-31

Brief Summary

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The investigators are trying to learn more about the cause of kidney diseases such as Focal Segmental Glomerulosclerosis (FSGS) and Nephrotic syndrome by studying genetics. The investigators are interested in discovering which genes play a role in causing a predisposition to FSGS/NS. The investigators also want to learn why FSGS/NS can run in families. Participation in our study involves a saliva sample and a urine sample that you can give from home. There is no cost to participate. All information is kept private and confidential. The investigators also like to include healthy volunteers (parents, spouses) if interested/available but of course this is completely optional.

Detailed Description

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The investigators welcome anyone (with or without a family history) with unexplained, non syndromic FSGS, nephrotic syndrome, or proteinuria to join the study. Participation involves a saliva (or blood if it is preferable) sample and urine sample (if applicable). There is no cost to participate and the study can be done from home in most cases.

Conditions

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Focal Segmental Glomerulosclerosis Nephrotic Syndrome End Stage Renal Disease Kidney Failure Unexplained Proteinuria

Study Design

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Observational Model Type

FAMILY_BASED

Study Time Perspective

PROSPECTIVE

Eligibility Criteria

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Inclusion Criteria

* Subjects with FSGS (focal segmental glomerulosclerosis)
* Subjects with NS (nephrotic syndrome)
* Subjects with unexplained kidney failure (have had a transplant or on dialysis)
* Subjects with unexplained proteinuria
* Family members of a person with FSGS, NS, kidney failure, or unexplained protein in their urine
* Healthy volunteers

Exclusion Criteria

* Patients whose kidney disease is already explained by another syndrome such as (Branchio Oto Renal Syndrome or Alports syndrome)
* Patients who already know the genetic cause of their kidney disease
Eligible Sex

ALL

Accepts Healthy Volunteers

Yes

Sponsors

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National Institutes of Health (NIH)

NIH

Sponsor Role collaborator

National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)

NIH

Sponsor Role collaborator

United States Department of Defense

FED

Sponsor Role collaborator

Beth Israel Deaconess Medical Center

OTHER

Sponsor Role lead

Responsible Party

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Martin R. Pollak

Professor of Medicine

Responsibility Role PRINCIPAL_INVESTIGATOR

Principal Investigators

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Martin R Pollak, MD

Role: PRINCIPAL_INVESTIGATOR

Beth Israel Deaconess Medical Center

Locations

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BIDMC

Boston, Massachusetts, United States

Site Status

Countries

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United States

Related Links

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Other Identifiers

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5R01DK054931-18

Identifier Type: NIH

Identifier Source: secondary_id

View Link

2009P000430

Identifier Type: -

Identifier Source: org_study_id

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