Access to Resources for Patients With PTEN Hamartoma Tumor Syndrome

Completed

Conditions studied: PTEN Gene Mutation

In brief

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.

Key facts

Study ID

NCT03680924

Run by

University of South Florida

People needed

13

Starts

2018-05-11

Expected to finish

2019-09-13

Last updated by the study team

2019-10-16

Who can join

Age: 18 and older. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• Family members, specifically a parent, legal guardian, or relative, of a child who meets the following:
• Age 3 to 17 years old at the time of survey completion
• Reported diagnosis of a PTEN mutation
• Enrollment in the RDCRN Contact Registry

You may not qualify if…

• Inability to provide informed consent and complete survey
• Inability to read and understand English

Where it is running

• University of South Florida — Tampa, Florida, United States

Full record on ClinicalTrials.gov

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