Trial record 1 of 1 for:    "Denys-Drash syndrome"
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Registry for Patients With Wilms' Tumor Suppressor Gene 1 (WT1) Mutation Associated Diseases

The recruitment status of this study is unknown because the information has not been verified recently.
Verified December 2010 by Universitätsklinikum Hamburg-Eppendorf.
Recruitment status was  Recruiting
GPN German Society for Paediatric Nephrology
DSD Disorders of Sex Development Network
GPOH German Society for Paediatric Oncology and Haematology
Information provided by:
Universitätsklinikum Hamburg-Eppendorf Identifier:
First received: December 1, 2010
Last updated: December 2, 2010
Last verified: December 2010

The Wilms' tumor suppressor gene 1 (WT1) encodes for a transcription factor which plays an important role during urogenital development. Patients carrying a WT1 germline mutation show symptoms like proteinuria, Wilms tumors, genital malformations and kidney failure, which usually occur in early childhood. Milder variants are possible and classification as one of the three rare syndromes associated with WT1 mutations (Denys-Drash syndrome, Frasier syndrome or WAGR syndrome) is not always possible. In this registry we are collecting detailed clinical data of affected individuals to establish genotyp-phenotype correlations with the greater goal to optimize patient care.

Denys-Drash Syndrome
Frasier Syndrome
Nephrotic Syndrome
Wilms Tumor

Study Type: Observational
Study Design: Observational Model: Cohort
Time Perspective: Retrospective
Official Title: Registry for Patients With WT1 Mutation Associated Diseases

Resource links provided by NLM:

Further study details as provided by Universitätsklinikum Hamburg-Eppendorf:

Estimated Enrollment: 70
Study Start Date: October 2010
Estimated Primary Completion Date: April 2011 (Final data collection date for primary outcome measure)

Genders Eligible for Study:   Both
Accepts Healthy Volunteers:   No
Sampling Method:   Probability Sample
Study Population

Patients with WT1 mutation


Inclusion Criteria:

  • Germline mutation in WT1 gene

Exclusion Criteria:

  • none
  Contacts and Locations
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below. For general information, see Learn About Clinical Studies.

Please refer to this study by its identifier: NCT01252901

Contact: Anja Lehnhardt, MD +49-40-741051200
Contact: Gabriele Holst, MA +49-40-741051293

Universitätskrankenhaus Hamburg-Eppendorf Recruiting
Hamburg, Germany
Sponsors and Collaborators
Universitätsklinikum Hamburg-Eppendorf
GPN German Society for Paediatric Nephrology
DSD Disorders of Sex Development Network
GPOH German Society for Paediatric Oncology and Haematology
Principal Investigator: Anja Lehnhardt, MD Universitätsklinikum Hamburg-Eppendorf
  More Information

Additional Information:

Responsible Party: Anja Lehnhardt, MD, University Medical Center Hamburg-Eppendorf Identifier: NCT01252901     History of Changes
Other Study ID Numbers: WT1 Registry
Study First Received: December 1, 2010
Last Updated: December 2, 2010
Health Authority: Germany: Ethics Commission

Keywords provided by Universitätsklinikum Hamburg-Eppendorf:
Wilms Tumor
Denys-Drash Syndrome
Nephrotic Syndrome

Additional relevant MeSH terms:
Denys-Drash Syndrome
Frasier Syndrome
Nephrotic Syndrome
Wilms Tumor
46, XY Disorders of Sex Development
Congenital Abnormalities
Disorders of Sex Development
Endocrine System Diseases
Genetic Diseases, Inborn
Gonadal Disorders
Kidney Diseases
Kidney Failure, Chronic
Kidney Neoplasms
Neoplasms by Histologic Type
Neoplasms by Site
Neoplasms, Complex and Mixed
Neoplastic Syndromes, Hereditary
Pathologic Processes
Renal Insufficiency
Renal Insufficiency, Chronic
Urogenital Abnormalities
Urogenital Neoplasms
Urologic Diseases
Urologic Neoplasms processed this record on May 21, 2015