There are 2 main types of research in which people can volunteer to take part:
Also called non-interventional studies, natural history studies, or sometime registries, these studies look at the natural course of PHTS, and do not involve the use of any potential new medication. Some are “retrospective” which means they look backwards at the participant’s medical and treatment history prior to joining the study. Some are “prospective” which means they follow the participant’s medical progress over the coming months or years. Some are both. All usually require participants to allow researchers to access their medical records. They may also require the participant to provide samples, complete questionnaires and other assessments.
Listed below is information about and links to ongoing PHTS studies (as of July 2021), including both PTEN Research funded studies and others.
The following studies are currently open to enrol people with PHTS: