It has been a long-term ambition of PTENUKI to get a Patient Registry set up for PHTS patients in the UK, and through the great work from Cambridge University and the support of the PTEN Research Foundation there is now have one available!

For more information please see:

We appreciate it is a personal choice as to whether you would wish to participate but a patient registry is only as good as the data it has in it, so PTENUKI encourage all PHTS/PTEN patients to participate in the study.


To be included in the registry and take part in the study, please fill out the Contact Us form on the registry website and someone will get in touch:


Patient registries are systems that help collect data about patients with the same condition over an extended period of time, and are critical for improving healthcare through research, especially for rare diseases which have a small number of patients, like PHTS.

The registry will provide (anonymised) essential information to researchers and medical professionals to help improve drug development, trials, treatments and healthcare for PHTS/PTEN patients.