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.
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.
Development of a new drug therapy for the treatment of Graves’ Disease
A new drug is being assessed at UK hospital sites for the treatment for Graves’ disease.
The trial is funded by Apitope International NV and the European Commission through a Framework 7 grant and has been approved by the Central Research Ethics Committee and the Medicines and Healthcare Products Regulatory Agency (MHRA).
What causes Graves’ disease?
Graves’ disease is an autoimmune condition that involves antibodies causing the thyroid gland to produce too much thyroid hormone; this is called hyperthyroidism.
There are currently three different principle treatment options for Graves’ disease that may be recommended by your doctor. These include anti-thyroid medications such as carbimazole, radioactive iodine treatment and in some incidences surgery may be required.
What is the study Drug?
The study drug is made from a mixture of two substances called peptides that are found naturally in proteins in the body. The study drug is designed to alter the body’s immune response by stopping the production of the antibodies that have caused the thyroid disorder. This first study in humans will test whether this peptide therapy (the study drug) specifically designed for Graves’ disease, is safe and well tolerated. It is also designed to provide initial information on whether it can improve your body’s immune response and prevent a thyroid disorder from developing.
Who can take part?
Women and men who:
- Are aged 18-65
- Have a diagnosis of Graves’ Disease and are not taking anti-thyroid therapy and have not had either; thyroid surgery or radioactive iodine treatment.
- Are not pregnant, breastfeeding or attempting to conceive
Where is the study taking place?
- Queen Elizabeth Hospital Birmingham
- Kings College Hospital London
- Royal Victoria Infirmary Newcastle
- Cardiff, University Hospital of Wales
- The Christie Hospital Manchester
- Royal Devon and Exeter Hospital
- Leeds Teaching Hospital NHS Trust
When does the study start and end?
The trial started recruitment in September 2016 and is due to finish recruiting in March 2017.
If you would like to take part but don’t live near one of these centres, you may still be eligible to join the trial. Please contact the Chief Investigator Professor Simon Pearce at firstname.lastname@example.org for more information about a participating centre in your area.
Travel expenses will be covered and a patient inconvenience payment will be made during your participation in the study.
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 12 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 email@example.com
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.