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.
BTF Feedback Survey 2019
Listening to patients’ needs and campaigning for improvements in their care has always been a priority for the BTF and the opinions of our members and supporters enable us to reflect on our activities and their impact, as well as help us to plan the work we do in the future. We would therefore be grateful for your feedback about the work we do and for suggestions about how we could do things differently. Please follow this link and complete this short questionnaire by 29 March 2019.
Targeting antigen-specific plasma cells in severe Graves’ disease
Researchers in Newcastle are planning a new study which aims to identify new treatments for patients with severe Graves’ disease (GD). GD is the name for the condition in which your immune system attacks your thyroid gland and this causes overactivity. In its mild form, GD is conventionally treated with antithyroid tablets or radioactive iodine therapy, with satisfactory patient outcomes. However, around 25% of individuals with GD have severe GD, characterised by either rampant thyroid overactivity and debilitating symptoms which are resistant to conventional antithyroid tablets, goitre, thyroid eye disease or thyroid dermopathy. These symptoms may occur simultaneously in the same individual and usually predict that conventional treatment will not be successful and that there will be unsatisfactory treatment outcomes.
The researchers would like your views about the study design in order to make it better for the patients who take part. To find out more about the project and how you can give feedback please complete each of the two short SurveyMonkey questionnaires you will find through these links:
Patients needed for Graves’ disease research study
Graves’ disease is one of the most common overt autoimmune disorders. Patients with Graves’ disease have autoantibodies known as TRAbs which have the ability to stimulate the TSH receptor on thyroid cells causing thyroid overactivity (hyperthyroidism).
Symptoms of hyperthyroidism include goitre, fatigue, heat intolerance, sweating, weight loss despite good appetite, shakiness, inappropriate anxiety, palpitations of the heart, shortness of breath, tetchiness and agitation, poor sleep, thirst, nausea and increased frequency of defaecation. The TRAbs present in patients with Graves’ disease can also cause eye problems in some patients.
Current therapy for Graves’ disease includes treatment with anti-thyroid drugs, destruction of the thyroid using radioiodine, or removing the thyroid through surgery (thyroidectomy). Some treatments like beta-blockers and calcium antagonists may be used to control some of the symptoms of hyperthyroidism.
Illingworth Research Group Ltd are coordinating a study to investigate a potential new drug K1‑70. K1-70 is a monoclonal antibody which is an inhibitor of TSH receptor stimulation by stimulating TRAbs, resulting in a decrease in the over-production of thyroid hormones. K1‑70 is being developed for the treatment of people who have Graves’ disease, thyroid cancer, and patients who would benefit from controlling thyroid stimulating hormone (TSH) receptor activity. See this page for more information.
The researchers require patients with Graves’ disease for this study. For more information, please contact:
- Volunteer Services team at the Medicines Evaluation Unit on 0800 655 6553 and quote study MEU 15/304
- Recruitment Team at the Royal Liverpool and Broadgreen Clinical Research Facility between 8.00am and 4.00pm on 0151 706 4863 and quote study CRU/5464 or text CRU/5464 to 07342065915.
Study of Graves' Disease in Young People
The clinical trial that is looking to see if the medicine Rituximab can improve outcomes in young people diagnosed with Graves’ disease (the RIG-D trial) finished recruiting participants in August 2018. We expect the results of this trail to be available towards the end of 2020. If you would like information regarding the background to the trial then contact Tim Cheetham by email at email@example.com
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
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.
ElaTION is no longer recruiting as we reached our recruitment target. The first patient was entered on to the trial in February 2015 and recruitment completed in September 2018 with 1006 patients successfully entered.
ElaTION is now in the follow up phase of the study. If you were recruited to the ElaTION study within the last year, you will receive some questionnaires from the ElaTION trial team about how you are feeling in the 3 months, 6 months, and 1 year after you were recruited.
The ElaTION trial team would be most grateful if you could find the time to complete these questionnaires for us, as these answers are very important to the outcomes of the study.
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.