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NCT00033137 · ClinicalTrials.gov registry record

Genetic Analysis of Birt Hogg-Dube Syndrome and Characterization of Predisposition to Kidney Cancer

A clinical trial of Kidney Cancer and Kidney Neoplasms, sponsored by National Cancer Institute (NCI).

Recruiting
Registry status
950
Enrollment target
1
Study location

NCT00033137: Recruiting study of Kidney Cancer and Kidney Neoplasms, sponsored by National Cancer Institute (NCI).

NCT00033137 is a study of Kidney Cancer and Kidney Neoplasms that is actively recruiting participants, run by National Cancer Institute (NCI). The registered enrollment target is 950 participants, above the 865-participant average among 60 other Kidney Cancer trials with a reported enrollment target (10% higher). The trial reports 1 study location across 1 state. According to ClinicalTrials.gov, the official US trial registry.

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The verdict

NCT00033137, a study of Kidney Cancer and Kidney Neoplasms, is actively recruiting participants, sponsored by National Cancer Institute (NCI).

RECRUITING
Registry status
950 participants
Enrollment target
1
Study location

Study Summary

This study will investigate the genetic cause of Birt Hogg-Dube (BHD) syndrome and the relationship of this disorder to kidney cancer. BHD is a rare inherited condition characterized by papules, or bumps-benign tumors involving hair follicles-on the head and neck. People with BHD are at increased risk of developing kidney cancer. Scientists have identified the chromosome (strand of genetic material in the cell nucleus) that contains the BHD gene and the region of the gene on the chromosome. This study will try to learn more about: * The characteristics and type of kidney tumors associated with BHD * The risk of kidney cancer in people with BHD * Whether more than one gene causes BHD * The genetic mutations (changes) responsible for BHD Patients with known or suspected Birt Hogg-Dube syndrome, and their family members, may be eligible for this study. Candidates will be screened with a family history and review of medical records, including pathology reports for tumors, and films of computed tomography (CT) and magnetic resonance imaging (MRI) scans. Participants may undergo various tests and procedures, including the following: * Physical examination * Review of personal and family history with a cancer doctor, cancer nurses, kidney surgeon, and genetic counselor * Chest and other x-rays * Ultrasound (imaging study using sound waves) * MRI (imaging study using radiowaves and a magnetic field) * CT scans of the chest and abdomen (imaging studies using radiation) * Blood tests for blood chemistries and genetic testing * Skin evaluation, including a skin biopsy (surgical removal of a small skin tissue sample for microscopic evaluation) * Cheek swab or mouthwash to collect cells for genetic analysis * Lung function studies * Medical photography of skin lesions These tests will be done on an outpatient basis in either one day or over 3 to 4 days. When the studies are complete, participants will receive counseling about the findings and recommendations. Patients with

Primary Outcome

Collection of blood, saliva, tissue \& urine for Identification of the Disease Gene, and Characterization of the disposition to Renal Cancer

Study Locations (1)

Maryland

  • National Institutes of Health Clinical Center - Bethesda

Trial Details

FieldValue
Enrollment Target 950 participants
Start Date 2002-05-13
National Cancer Institute (NCI)

3,257 total trials

What NCT00033137 shows while recruiting

NCT00033137 is an observational study that tracks outcomes without assigning an intervention. The registered 950 participants enrollment target is mid-sized for trials with a published cap, above the 865-participant average among 60 other Kidney Cancer trials with a reported enrollment target (10% higher).

The record links to 4 conditions, with Kidney Cancer appearing as the primary indexed condition, and to 0 interventions.

NCT00033137 reports a single indexed study location in Maryland.

Frequently Asked Questions

What is clinical trial NCT00033137 about?

NCT00033137 is a clinical study titled "Genetic Analysis of Birt Hogg-Dube Syndrome and Characterization of Predisposition to Kidney Cancer". This study will investigate the genetic cause of Birt Hogg-Dube (BHD) syndrome and the relationship of this disorder to kidney cancer. BHD is a rare inherited condition characterized by papules, or bumps-benign tumors involving hair follicles-on the head and neck. People with BHD are at increased ri...

What is the current status of trial NCT00033137?

This trial is currently recruiting. The enrollment target is 950 participants. The study started on 2002-05-13.

What conditions does trial NCT00033137 study?

This clinical trial studies the following conditions: Kidney Cancer, Kidney Neoplasms, Pneumothorax, FLCN Protein, Human.

Who is sponsoring clinical trial NCT00033137?

This trial is sponsored by National Cancer Institute (NCI), which has 3,257 total clinical trials registered on ClinicalTrials.gov.

Where is trial NCT00033137 being conducted?

This trial has 1 study location across Maryland. Contact the study sites directly through ClinicalTrials.gov for enrollment availability.

Similar trials for Kidney Cancer

Matched on the same primary condition, ranked to surface studies in the same phase first, then by recruiting status, no relevance scoring or editorial curation.

Where NCT00033137's enrollment target sits among peer trials

950 8th of 60 higher than 53 of 60 other Kidney Cancer trials

participants (enrollment target), bucketed by value

Each bar is a band; taller bars hold more other Kidney Cancer trials. The dashed line + filled bar mark this entry. Hover or tap any bar for its full count and share, and where it sits relative to this entry.

Source ClinicalTrials.gov registry export · 2026-08-08

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Source: ClinicalTrials.gov NCT00033137, the US trial registry maintained by the National Library of Medicine. NCT00033137 (mid enrollment · single site footprint · recruiting) retrieved and formatted by PlainTrial, see methodology.