Access to Resources for Patients With PTEN Hamartoma Tumor Syndrome
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|ClinicalTrials.gov Identifier: NCT03680924|
Recruitment Status : Recruiting
First Posted : September 21, 2018
Last Update Posted : February 7, 2019
|Condition or disease|
|PTEN Gene Mutation|
The purpose of this study is to investigate access to clinical care and clinical research for patients with PTEN hamartoma tumor syndrome. This research will entail an anonymous online survey sent to families/caretakers of affected children. The survey will inquire: (1) basic clinical information about the child, such as diagnoses (both genetic and neurodevelopmental), level of functioning (estimated IQ) (2) clinical specialists that the child sees or needs to see (3) how families learn about clinical trials/research relevant to their child (4) basic demographics about the parent/caretaker completing the survey.
Specifically, this survey will collect information pertaining to:
- Number of affected children in household
- PTEN mutation type of affected children
- Age and gender of affected children
- Age, neurodevelopmental disorders, medical problems, IQ, and access to clinical care (specialists currently being seen, specialists not able to see and why) of most affected child
- Research methods and mediums for disorder-specific treatment options for affected children
- Reasons behind not participating in clinical research options
- Facts (gender, age, if PTEN mutation carrier, work status, relationship to affected children, days per week of caregiving responsibilities, education level) about participant completing survey.
In total, the survey should take no more than 15 minutes to complete.
|Study Type :||Observational|
|Estimated Enrollment :||100 participants|
|Official Title:||Access to Resources for Patients With PTEN Hamartoma Tumor Syndrome|
|Actual Study Start Date :||May 11, 2018|
|Estimated Primary Completion Date :||April 2019|
|Estimated Study Completion Date :||April 2019|
- Online Survey completed by family member(s) of affected child(ren) with PTEN [ Time Frame: 3 months ]The survey will collect information regarding number of affected children in household, PTEN mutation type of effected children, age and gender of effected children, Age, neurodevelopmental disorders, medical problems, IQ, and access to clinical care (specialists currently being seen, specialists not able to see and why) of most affected child, research methods and mediums for disorder-specific treatment options for affected children, reasons behind not participating in clinical research options, and Facts (gender, age, if PTEN mutation carrier, work status, relationship to affected children, days per week of caregiving responsibilities, education level) about participant completing survey.
To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT03680924
|Contact: Miranda Williams, MS||8133969155||Miranda.Williams@epi.usf.edu|
|United States, Florida|
|University of South Florida||Recruiting|
|Tampa, Florida, United States, 33612|
|Contact: Miranda Williams, MS|