AMEND UK: First UK National Research Registry For MEN1 & Pancreatic Neuroendocrine Tumours In Sight
July 20, 2017|
AMEND, UK, has been working with a team of specialists and specialist centres, led by AMEND Patron, Professor Raj Thakker from Oxford, in developing a new National Research Registry for MEN1 and pancreatic neuroendocrine tumours (pNETs). The Registry is now in its final stages of development and aims to enable researchers to look more closely at what drives the development of tumours in MEN1 and why some people are more badly affected than others. It is hoped that this could lead to better tailored treatments in the future.
The Registry will collect data on anyone in the UK with MEN1 and PNETs, and will include a patient portal through which patients can self-refer themselves. With this consent, data will then be requested from the patient’s physician.
AMEND CEO Jo Grey has been a member of the development team, and is also a member of the Data Access Committee which will assess the individual requests from researchers to use the collected data. We are now looking forward to seeing this initiative encourage large scale, collaborative research into MEN1 and pancreatic NETs within the UK. The Registry will finally bring us in line with many other countries within Europe and beyond, encouraging further multi-national collaborative studies.
If you’d like to receive updates on the Research Registry and prompt access the Patient Portal link when it becomes available, click here sign up to AMEND’s List.