Access to Resources for Patients With PTEN Hamartoma Tumor Syndrome
NCT03680924 · Status: COMPLETED · Type: OBSERVATIONAL · Enrollment: 13
Last updated 2019-10-16
Summary
The purpose of this study is to gain a better understanding of access to clinical and research resources for families of children affected with a phosphatase and tensin homology (PTEN) mutation. Ultimately, the researchers hope to be able to use this information to develop a standard of care for affected individuals and their family members. Family members/legal guardians of an individual with a PTEN mutation enrolled in the Rare Diseases Clinical Research Network (RDCRN) Contact Registry will be invited via email to participate in this study.
Conditions
- PTEN Gene Mutation
Sponsors & Collaborators
- collaborator OTHER
-
University of South Florida
lead OTHER
Eligibility
- Min Age
- 18 Years
- Sex
- ALL
- Healthy Volunteers
- No
Timeline & Regulatory
- Start
- 2018-05-11
- Primary Completion
- 2019-04-01
- Completion
- 2019-09-13
Countries
- United States
Study Locations
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