Association for Multiple Endocrine Neoplasia Disorders

Do You Have Medullary Thyroid Cancer?

The Thyroid Cancer Forum - UK (TCF-UK) is a national organisation that facilitates communication between physicians and scientists working in the thyroid cancer field. As well as facilities for medical professionals, there is also a website accessible to anyone that provides general information on thyroid cancer as well as links to other information sources. Click here for more information.

One aspect of thyroid cancer management that is of interest to the group is the treatment of medullary thyroid cancer. This is a rare disease and therefore no single doctor or hospital has large numbers of patients under their care.  For these reasons, it is difficult to analyse the various treatment options available. TCF-UK has therefore embarked on a national project to collect information on this rare disease so that we are better placed to make decisions in the future.

As TCF-UK is not part of the NHS (although all members work in the NHS), we cannot collect the necessary data without asking the permission of the patients involved.  To this end, a member of the thyroid cancer team must ask each patient if they are willing to give their consent for data collection. The  pdf Medullary Thyroid Cancer (Sporadic) Patient Information Book 2016 (941 KB)  is available and the consent only needs to be verbal and noted in the hospital records.

The data collected is essentially anonymous and can only be accessed by your own doctor and the TCF-UK data controller.  Due to the rarity of the disease, it will take years for us to collect enough data that can be analysed, presented or published. We expect this data to be very valuable in facilitating developments in thyroid cancer treatment in the future.

If you have medullary thyroid cancer and would like your information to be collected, please contact your thyroid cancer specialist and / or TCF-UK Director and Data Controller, Dr Laura Moss, so that they can facilitate this project. Not all thyroid cancer doctors are TCF-UK members, so they may not be aware of the project, but hopefully, they will be willing to join or let TCF-UK collect information on your behalf.

If you require any further information, please do not hesitate to contact:

Dr Laura Moss, FRCP, FRCR, LLM
TCF-UK Director and Data Controller
Consultant Clinical Oncologist
Velindre Cancer Centre
Cardiff
CF14 2TL