The BTF is a patient-led organisation and we are often asked by medical and other professionals for help with research projects. If you would like to take part in any of the projects below, please get in contact in the ways shown.
Where possible the results and findings of these projects will be published in our BTF member newsletter and on this website.

Study for adults with severe Graves’ Disease

We would like to highlight a clinical trial taking place in Newcastle that is looking at a new way of treating adults with severe Graves’ hyperthyroidism (Graves’ disease). The Graves-PCD trial has been funded by the Medical Research Council and is investigating whether the drug daratumumab can be used to treat severe Graves’ disease, and if so, how much of it should be given. The results of the trial will hopefully help to improve treatment for people with severe Graves’ disease in the future.

If you have Graves’ disease with severe symptoms (for instance it is affecting your eyes and/or you have a large thyroid goitre) and would like further details about taking part in this study please contact the study team:  [email protected]  or 0191 282 4636

Please note: Full travel reimbursement may not be possible for patients living at considerable distance from the study’s Newcastle base.

If you have had treatment for benign thyroid nodules, we’d like to hear from you.

Thyroid nodules are common. But even though the majority of thyroid nodules are benign and do not require any treatment, they can sometimes cause problems with breathing, swallowing and embarrassment due to their appearance.

Until recently the only treatment for these problematic benign nodules was thyroid surgery which carries certain risks, in particular of damage to the recurrent laryngeal nerve and the parathyroid glands. It is also likely that patients who have thyroid surgery will go on to need thyroid hormone therapy, or levothyroxine, for the rest of their lives.

In recent years a new, less invasive treatment has become available. Radiofrequency ablation (RFA) has been shown in several studies to shrink the size of benign nodules and to cause fewer complications than thyroid surgery. We are working with researchers who would like to do a clinical trial to directly compare the effectiveness of RFA with surgery. If successful, the results of this study will mean more patients have access to improved treatment options in the future.

To help build a study design that best reflects patients’ experiences and captures what is important to them, the researchers want to hear from people who have had, or are considering, treatment for benign thyroid nodules. Maybe you have had RFA treatment already? If you would like to get involved and take part in a small focus group with the researchers who are leading this study please email [email protected] with the subject header ‘RFA research’.


Ultrasound-guided Percutaneous Microwave Ablation for Benign Thyroid Nodules

The National Institute of Health and Care Excellence (NICE) is carrying out a project to find out more about a procedure that is sometimes used to treat patients with benign thyroid nodules. In this procedure, a thin wire is inserted into the nodule under local anaesthetic. Ultrasound is used to guide it into position. The wire sends out microwaves that heat the nodule to destroy it (ablation). The aim is to shrink the nodule to relieve symptoms and improve appearance.

If you have had this procedure please complete this short questionnaire so that NICE will consider your feedback as part of the project. Please send your responses before 15 April 2022.

Weight management and wellbeing survey - this survey has now closed.

Thank you to everyone who took part in our survey. We had a phenomenal 1000+ replies. Researchers at the University of Plymouth are now analysing the results and we will publish our findings when they are ready.

Do you struggle with your weight? Would you like support with this and to improve your wellbeing? 

We need your views!

Maintaining a healthy weight is a challenge faced by lots of people. We know that many thyroid patients, in particular, find managing their weight can be a challenge. 

We are excited to be working on a new project that aims to help you understand more about the science of weight and how thyroid disease can affect weight. We will also seek to offer practical support to achieve weight loss targets and improve wellbeing.

Please help us understand what's important to you and identify what would be useful to you by answering our questionnaire on the link below. The questionnaire has been created by researchers at the University of Plymouth following work with our patient focus groups and medical advisors.

The survey is open to anyone diagnosed with a thyroid disorder and will take approx. 10-15 minutes to complete. The results will remain anonymous. 

If you have the results of your most recent blood tests, please have them to hand but don’t worry if you don’t know what your results were.

Please share this with friends and family living with thyroid disease who would also like to give their views.

Thank you.

Patient attitudes to surgery and radioactive iodine as a treatment for hyperthyroidism

This survey has now been closed. Thank you to everyone who completed it. Your responses are extremely valuable and will help inform future research. 

Hyperthyroidism (or overactive thyroid) affects up to 3% of the UK population. Current treatment options include antithyroid drugs, radioactive iodine, and surgery. We are working with a team of researchers based at Newcastle University who would like to understand more about patients’ understanding of these treatment options and which (if any) of the treatments may offer better outcomes with regard to long-term health implications, like safety and quality of life. 

If you have had radioactive iodine therapy or thyroid surgery for your hyperthyroidism, please complete this short survey.

E-MPATHY Study: Patient experiences of hypothyroidism treatment and care

This survey has now closed. Thank you to all those who completed it. We will share the results of this study when they are published. 

Thyroid Federation International (TFI) (, a global network of patient support organisations has teamed up with four international thyroid experts to conduct research that will help us to understand patient experiences of treatment and care. This E-MPATHY (E-Mode Patient self-Assessment of THYroid therapy) study is being overseen by Picker Institute Europe (Picker), who are an independent healthcare research charity ( Funding for the project is provided by Institut BioChimique SA (IBSA).

TFI are reaching out to patients who have been diagnosed with hypothyroidism, and asking them to complete a questionnaire. 

Patients with Graves' disease still urgently needed for clinical trial 

This study has now stopped recruiting for patients. Thank you to everyone who took part. We will report on the results of the trial when we receive them. 

This phase I study is investigating a potential new drug, K1-70, to treat patients who have Graves’ disease, and patients who would benefit from controlling Thyroid Stimulating Hormone Receptor (TSHR) activity. Patients who were diagnosed and treated for thyroid cancer more than five years ago may also be eligible to take part in the trial.

A Safety Review Committee found the drug to have been safe and well-tolerated in all the patients treated so far. The company is now actively recruiting for their final cohort so please contact the site urgently, before the end of September 2020.

Travel to and from the study site is provided from a patient’s chosen location, as well as accommodation for patients traveling from far, with COVID-19 safety considerations in place.

If you would like some more information or are interested in taking part, please contact the Volunteer Services team at the Medicines Evaluation Unit on 0800 655 6553 and quote study MEU 15/304.

Understanding the Needs of Children & Young People with thyroid conditions

Dr. Alyson Norman & Dr. Sue Jackson are working with MSc students at the University of Plymouth to research the needs of children and young people with endocrine disorders, such as thyroid problems. They are trying to find out about the social, mental, and physical experiences of families living with these conditions. They are also interested in issues and/or concerns related to healthcare. The researchers are looking for young people aged between 10 and 25, or their parents to interview about their experiences.  They hope their research will provide an insight into difficulties young patients may experience and help health professionals better understand their patients’ needs and thus improve things for them.

If you, or your child, would be interested in taking part in this study please contact Alyson on [email protected] or Sue on [email protected]

Study of Graves' disease in young people

Rituximab (rituximab in graves' disease or RIG-D)

Updated February 2020

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 trial to be available towards the end of 2021. if you would like information regarding the background to the trial please contact Tim Cheetham by email at [email protected]

TED survey

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 always interested to hear about your experience for the BTF's thyroid eye disease project. This will help to bring about improvements for future patients. Please email [email protected]

We rely on donations to fund our work supporting and informing people living with thyroid disorders. Please consider making a donation or becoming a member


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