Polycystic Kidney Disease Data Repository

NCT ID: NCT00792155

Last Updated: 2025-11-12

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

RECRUITING

Total Enrollment

1000 participants

Study Classification

OBSERVATIONAL

Study Start Date

2002-11-30

Study Completion Date

2030-12-31

Brief Summary

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Autosomal dominant polycystic kidney disease (PKD) is the most common inherited kidney disease, affecting more than 400,000 people in the U.S. and 5 million people worldwide. PKD is the 4th most common cause of kidney failure requiring dialysis and/or transplantation. Over half of all PKD patients develop kidney failure by age 60 years, although age of onset of kidney disease varies widely, even among members of the same family.

Despite the fact this is a relatively common problem, relatively few patients have been studied for a sufficient period of time to fully understand how patients are affected over the course of their lifetime. The reason for creating this repository is to collect information about PKD so that the investigators may fully understand its complications, including high blood pressure, heart attack, and stroke. This information may also aid in the development of improved treatment strategies.

Detailed Description

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Visit #1:

* An initial detailed history, physical examination, and laboratory evaluation
* An extensive family history of PKD will be obtained from the patient.

Follow-up Study Visits:

\- Patients will return to the outpatient facility for detailed follow-up examinations every other year after Visit 1.

Conditions

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Polycystic Kidney Disease

Keywords

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PKD

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Eligibility Criteria

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Inclusion Criteria

* Any person, age 18 or older, with previously diagnosed ADPKD is eligible to participate.

Exclusion Criteria

* Inability to provide informed consent.
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Weill Medical College of Cornell University

OTHER

Sponsor Role collaborator

New York Presbyterian Hospital

OTHER

Sponsor Role collaborator

The Rogosin Institute

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Jon Blumenfeld, MD

Role: PRINCIPAL_INVESTIGATOR

The Rogosin Institute

Locations

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The Rogosin Institute

New York, New York, United States

Site Status RECRUITING

Countries

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United States

Central Contacts

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Jon Blumenfeld, MD

Role: CONTACT

Phone: 212-746-1553

Email: [email protected]

Facility Contacts

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Jon Blumenfeld, MD

Role: primary

References

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Goel A, Shih G, Riyahi S, Jeph S, Dev H, Hu R, Romano D, Teichman K, Blumenfeld JD, Barash I, Chicos I, Rennert H, Prince MR. Deployed Deep Learning Kidney Segmentation for Polycystic Kidney Disease MRI. Radiol Artif Intell. 2022 Feb 16;4(2):e210205. doi: 10.1148/ryai.210205. eCollection 2022 Mar.

Reference Type DERIVED
PMID: 35391774 (View on PubMed)

Zhang Z, Bai H, Blumenfeld J, Ramnauth AB, Barash I, Prince M, Tan AY, Michaeel A, Liu G, Chicos I, Rennert L, Giannakopoulos S, Larbi K, Hughes S, Salvatore SP, Robinson BD, Kapur S, Rennert H. Detection of PKD1 and PKD2 Somatic Variants in Autosomal Dominant Polycystic Kidney Cyst Epithelial Cells by Whole-Genome Sequencing. J Am Soc Nephrol. 2021 Dec 1;32(12):3114-3129. doi: 10.1681/ASN.2021050690. Epub 2021 Dec 1.

Reference Type DERIVED
PMID: 34716216 (View on PubMed)

Other Identifiers

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0304006105

Identifier Type: -

Identifier Source: org_study_id