As a patient-led organisation, BTF is often asked by medical and other professionals for help in researching thyroid disorders and patient experiences. All surveys are vetted by BTF and unless otherwise stated any information you give is confidential.
After completion, findings are often published in the research news section.
Thyroid Surgery Survey
The Butterfly Thyroid Cancer Trust have put together a short survey. The survey runs until the end of September 2017.
Thyroid Receptor Dysfunction Research Project
We are looking for volunteers who have been diagnosed with thyroid receptor dysfunction to come along and take part in a research project at Moorfields Eye Hospital. This research is trying to identify the mechanism by which thyroid receptor dysfunction impacts on vision and in particular, people’s colour vision. This will be a key step towards finding treatments for this and similar genetic eye disorder.
If you are interested in taking part, you would need to be free to attend Moorfields for a short visit (about one hour) in the coming months. The test involves sitting at a computer and clicking either a left or right button when images appear on the screen. The test is completely non-invasive, we will not be giving you any medications, you will not have to wear any special glasses or eye patches to take the test. All travel costs will be reimbursed.
For more information or to find out how to take part please contact: Dr. Matteo Rizzi,firstname.lastname@example.org, tel. 07835164303
Study of Graves' Disease in Young People
We would like to highlight a new trial that is looking at a novel way of treating Graves’ hyperthyroidism (Graves’ disease) in the young.
The trial involves giving a single dose of a medicine called Rituximab on the basis that it may increase the number of individuals whose hyperthyroidsm settles or goes away following a short course of standard anti-thyroid drug treatment with carbimazole.
When you were diagnosed with thyroid eye disease, what support was helpful to you? Was your GP able to help you? What was missing?
We're very interested to hear of your experience which will be helpful for the BTF's thyroid eye disease project as well as for a group of GPs to whom we are speaking, and will help to bring about improvements for future patients. Any information we share with the GPs will remain anonymous. Please email Janis Hickey at: email@example.com
Thank you for your help.
The ElaTION trial
Project lead: Professor Hisham Mehanna
Co-ordinating centre: Birmingham Clinical Trials Unit, University of Birmingham
The ElaTION trial is a randomised controlled diagnostic study which is looking at the potential benefit of using a technique called Real Time Elastography (RTE) alongside the standard ultrasound-guided Fine Needle Aspiration (FNAC) in the examination of thyroid nodules.
It is believed that RTE can help improve the accuracy of the diagnosis of thyroid nodules which could reduce the number of FNAC required before a diagnosis is made. It could also decrease the number of patients undergoing unnecessary surgery.
We hope to recruit 1000 patients on to the trial. The first patient was entered on to the trial in February 2015 and recruitment is planned to finish at the end of September 2017. Follow up will last until October 2018.
The lead researchers are keen to recruit as many patients as possible so they can be sure that numbers are big enough to make the eventual results reliable. So if you might be interested in taking part, here’s what you need to know:
Who can take part?
The researchers are recruiting patients who:
- Are aged 18 or over
- Have at least one thyroid nodule, and
- Have not had a previous FNAC in the previous six months.
Where is it taking place?
The following hospitals are currently recruiting patients, with more sites due to open very soon:
Queen Elizabeth Hospital, Birmingham
King’s College Hospital, London
Queen Alexandra Hospital, Portsmouth
Ipswich Hospital, Ipswich
Lister Hospital, Stevenage
Hammersmith Hospital, London
Charing Cross Hospital, London
St Mary’s Hospital, London
Basildon Hospital, Basildon
Leicester Royal Infirmary, Leicester
North Manchester Hospital, Manchester
Norfolk and Norwich University Hospital, Norwich
James Paget Hospital, Great Yarmouth
Ashford and St Peter’s Hospital, Surrey
Castle Hill Hospital, Hull
Central Middlesex Hospital, London
If you would like to take part in the trial please contact the ElaTION team on 0121 414 9013, or email firstname.lastname@example.org
Further information is available at www.birmingham.ac.uk/ElaTION
The trial is funded by the Health Technology Assessment (HTA) Programme of the National Institute of Health Research (NIHR), and sponsored by the University of Birmingham. The study has full ethical approval from the MRES Committee South Central – Berkshire, Ref: 14/SC/1206 – IRAS 142485.