RECRUITING

Von Hippel-Lindau (VHL): Clinical Manifestations, Diagnosis, Management and Molecular Bases of Inherited Renal and Other Urologic Malignant Disorders

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

We will investigate the clinical manifestations and molecular genetic defects of heritable urologic malignant disorders. Families with urologic malignancy with known or suspected genetic basis will be enrolled. Affected individuals or individuals suspected of having a germline urologic malignant disorder will undergo periodic clinical assessment and genetic analyses for the purpose of: 1) definition and characterization of phenotype, 2) determination of the natural history of the disorder, and 3) genotype/phenotype correlation. Genetic linkage studies may be performed in situations in which the genetic basis of the disorder has not been elucidated. ...

Official Title

Von Hippel-Lindau (VHL): Clinical Manifestations, Diagnosis, Management and Molecular Bases of Inherited Renal and Other Urologic Malignant Disorders

Quick Facts

Study Start:1990-12-05
Study Completion:N/A
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT00001238

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:2 Years
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:Yes
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * One or more histologically proven or suspected renal carcinomas and/or cysts
  2. * Cerebellar, spinal, medullary or cerebral hemangioblastomas
  3. * Retinal angioma
  4. * Pancreatic neuro-endocrine carcinoma,micro cystadenoma and/or cysts
  5. * Pheochromocytoma
  6. * Papillary cystadenoma of the epididymis or broad ligament
  7. * Endolymphatic sac tumor
  8. * Cutaneous fibrofolliculomas or multiple skin-colored papules
  9. * History of spontaneous pneumothorax
  10. * Lung cysts
  11. * Thyroid carcinoma
  12. * Intestinal polyposis plus/minus colon cancer
  13. * Cutaneous or Uterine leiomyoma or uterine leiomyosarcoma, sarcoma
  1. Pregnancy or breastfeeding
  2. Severe psychiatric disorders
  3. Active substance abuse
  4. Unstable medical conditions
  5. Inability to comply with study requirements

Contacts and Locations

Study Contact

Deborah A Nielsen, R.N.
CONTACT
(240) 760-6247
deborah.nielsen@nih.gov
W. Marston Linehan, M.D.
CONTACT
(240) 858-3700
linehanm@mail.nih.gov

Principal Investigator

W. Marston Linehan, M.D.
PRINCIPAL_INVESTIGATOR
National Cancer Institute (NCI)

Study Locations (Sites)

National Institutes of Health Clinical Center
Bethesda, Maryland, 20892
United States

Collaborators and Investigators

Sponsor: National Cancer Institute (NCI)

  • W. Marston Linehan, M.D., PRINCIPAL_INVESTIGATOR, National Cancer Institute (NCI)

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date1990-12-05
Study Completion DateN/A

Study Record Updates

Study Start Date1990-12-05
Study Completion DateN/A

Terms related to this study

Keywords Provided by Researchers

  • Hereditary Papillary Renal Cancer (HPRC)
  • Birt Hogg Dube (BHD)
  • Hereditary Leiomyomatosis and Renal Cell Carcinoma (HLRCC)
  • Pheochromocytoma
  • Von Hippel-Lindau (VHL)

Additional Relevant MeSH Terms

  • Kidney Cancer
  • Urologic Malignant Disorders
  • Renal Cell Carcinoma
  • Familial Renal Cancer (FRC)
  • Clear Cell Renal Cancer