Access to Resources for Patients With PTEN Hamartoma Tumor Syndrome

Plain-language summary

This study examines access to resources among families of children with a PTEN gene change, through a survey. Parents, legal guardians or relatives of a child aged 3-17 with a reported PTEN mutation, who are enrolled in the relevant contact registry, may take part. It is a study without an assigned phase and has been completed.

The summary above is a plain-language rendering of the official record. The original English title is shown for reference.

Trial details

Phase

N/A

Status

Completed

Sponsor

University of South Florida

Start date

5/11/2018

Estimated completion

9/13/2019

Countries

United States

Related genes

Locations

• Tampa, United States

Eligibility criteria

Criteria are reproduced from the ClinicalTrials.gov record in the original English. Only the trial team can determine eligibility.

Inclusion Criteria:

1. 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
2. Enrollment in the RDCRN Contact Registry

Exclusion Criteria:

1. Inability to provide informed consent and complete survey
2. Inability to read and understand English