Patient Registry
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 essential information to researchers and medical professionals to help improve drug development, trials, treatments and healthcare for PHTS/PTEN patients.
Registering is completely voluntary, but a patient registry is only as good as the data it has in it, so PTENTurkiye encourage all PHTS patients to participate in the study. Personal information will be kept only within the registry where access is restricted.
How can you register?
Send us a massage through the Contact Us page, or send us an email at info@tpenturkiye.org.
One of our researches will contact you to send you the registration form. You can fill out that registration form yourself or together with your doctor.
If you have any questions you can reach out to us by email. If you would like us to contact you by phone, just let us know. You can leave the patient registry at any time and you can request your information be removed.
For more information: contact us.