The BTF is a patient-led organisation and we are often asked by medical- and research professionals for help with research projects and surveys. 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.

Patient experience of thyroid surgery in UK

Have you had a surgical operation on your thyroid in a UK hospital?

If so, we would love to hear from you!

We are interested in your experiences whether the surgery was for thyroid cancer or for benign (non-cancer) thyroid disorders, like Graves’ disease, goitre or thyroid nodules. 

If your child (under 18) had thyroid surgery and would like to contribute, you can answer on their behalf.  

The results of the survey will be used by the BTF and may also be shared anonymously with the medical professionals we work with to improve their understanding of patient experiences. All information received will be treated in accordance with our Privacy Policy

Complete the survey

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 been diagnosed with severe Graves' disease (for instance it is affecting your eyes and/or you have a large thyroid goitre or you know you have a very raised thyroid receptor antibody level) in the last 12 months or have relapsed in the last 12 months, you may be eligible to take part in the trial. For more information please discuss this with your own doctor or contact the study team: [email protected] or 0191 2824636.

Please note: Eligible participants proceeding to participate in the study might not receive full travel reimbursement if they are living at considerable distance from the study’s Newcastle base.

Share your experiences of referral to an ophthalmologist 

Have you suffered from an eye problem and been referred to a hospital eye department (Ophthalmologist)? If so,  researchers at the University of Sheffield would like to hear about your experience!

You are invited to take part in a short survey about your eye problems and referral. The information you provide will help researchers at the University of Sheffield understand any problems in the referral system and the impact this had on you. The survey will take about 10 minutes to complete.

This research is being conducted as part of a PhD at the University of Sheffield and has been approved by the University of Sheffield Ethics Committee. The results may be published in a journal article. All responses will be completely anonymous and no personal information will be collected.

As a thank you for your time in answering this survey, there is the option to be entered into a prize draw with the chance to win a £30 Amazon voucher. If you would like to be entered into the prize draw a separate link will be provided immediately after you complete the survey and press 'submit'. The lottery entry will not be linked to your survey responses (these will remain anonymous).

If you have any questions or comments, please contact [email protected]

Complete the survey

Graves' disease research study

Researchers in Newcastle are looking for young volunteers (aged 12-24 years) with Graves’ disease, or who have previously been diagnosed with it, to take part in an online focus group.

They are in the process of setting up a research study in GD and would like your opinion regarding how best to do this.

Recent research found that the remission rate (or disappearance of the signs or symptoms of it) in young people with GD is only 20-30% after three years of antithyroid drug treatment. In other words, thyroid gland overactivity (hyperthyroidism) returns in 70 to 80% of people within a year of stopping carbimazole treatment.  

They recently carried out a study which showed that giving one dose of a medicine called rituximab, as well as a year of antithyroid drug, increased the remission rate to nearly 50%.

If rituximab is found to be an effective treatment then it would reduce the number of people who need to have thyroid surgery or radioactive iodine and hence thyroid hormone replacement for life.

To help them study this in more detail, they wish to carry out a bigger trial study over a longer period of time. They are asking for patient input as they try and set this up.

They plan to run two focus groups each lasting for up to an hour. One will be for young people under 16 years of age. The other session will be for young people aged 16 years and over. There will be up to five young people taking part in each meeting. You will receive a £25 Amazon voucher (or similar of your choice) to compensate you for the time you are kindly giving up to help them.

If you have any questions, or if you would like to take part, please email [email protected] for further information.

Deadline for registering your interest is 31 May 2023

Clinical trial recruiting people due to have thyroid surgery

What is the NIFTy trial about?

The aim of the trial is to find out whether using near-infrared fluorescence imaging could reduce the number of people whose parathyroid glands become damaged during thyroid surgery.

The tiny parathyroid glands (behind the thyroid gland) are sometimes hard to locate but emit fluorescence at a particular wavelength. A special camera (that detects light in the near-infra red range) picks this up. In addition, a dye available for clinical use called indocyanine green (ICG) is injected to show the blood supply to the parathyroid glands. This is also detected by the same camera; thus highlighting both the glands and their blood supply.

Protecting these glands is very important because they produce parathyroid hormone which maintains calcium levels in the blood. Removing or damaging the parathyroid glands during surgery causes a condition called post-surgical hypoparathyroidism which can require lifelong treatment.

Who can enter?

The trial is now recruiting in several hospitals around the UK until 31/12/2023. It is open to people who are having total thyroid surgery, to remove the whole thyroid, or completion surgery to remove the remaining lobe of their thyroid following a partial thyroidectomy. You will need to discuss your suitability and the entry requirements with your doctor.

What happens if I am eligible to join the trial?

Half the participants will be randomly selected by computer to have the operation with the surgeon using near-infrared fluorescence imaging. The other half will have the operation without using near-infrared fluorescence imaging. Neither you nor your doctor will know which group you are in until this randomisation process is done. The operation you have will be the same whether your surgeon uses the device or not.

Will I have to do anything else?

You will be asked to fill in two questionnaires when you join the trial and at 1 month and 6 months after your surgery. One of the questionnaires will relate to your general quality of life and the other will be about your condition and how it affects you. No extra hospital visits will be needed.

How do I find out more?

The study is being run from Sheffield Teaching Hospitals NHS Foundation Trust

Key contacts are:

Prof Saba Prakash Balasubramanian, [email protected]

Katie Gordon, [email protected]

Read summary of the trial in Plain English

Do you live in Northern Ireland and have Graves’ disease? Your views are needed

Whether you have a diagnosis of Graves’ disease with, or without, TED researchers would like your views!

Dr Karen Mullan, consultant endocrinologist at the Royal Victoria Hospital, Belfast is inviting patient input to a quality improvement initiative that has been started for patients with Thyroid Eye Disease (TED) in Northern Ireland (NI). She writes:

Thyroid eye disease is an inflammatory condition associated with thyroid gland dysfunction. It affects around 50,000 people in the UK and patients may have a spectrum of symptoms and signs from dry/itchy eyes to disfigurement and rarely sight loss. Good outcomes are achievable with preventative measures and timely treatment.

TEAMeD-5 is a four-nation quality improvement initiative designed to improve the care of people with TED in the UK and it is the first European project of its kind. TEAMed- NI is a regional group of physicians, nurses, and eye surgeons from across all the Trusts in NI who wish to standardise and improve the care pathway for patients with TED over the next 18 months.

Our aims are to reduce the time from presentation to diagnosis, referral and treatment by a multi-disciplinary team. We also plan to educate patients and professionals about TED prevention through anti-smoking and early warning strategies. In these ways, we hope to improve outcomes for our patients. 

We are seeking help from patients with Graves’ disease to help shape this process. This would involve online and in-person (Covid restrictions allowing) discussions at ~four-month intervals to discuss plans and progress and to get feedback. We would compensate participants for their time and travel expenses.

I would be very grateful if you would consider helping us in this way. If interested please contact [email protected]

Study for adults with severe Graves’ Disease

This study is now closed. We will share the results when they are available.

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 been diagnosed with severe Graves' disease (for instance it is affecting your eyes and/or you have a large thyroid goitre or you know you have a very raised thyroid receptor antibody level) in the last 12 months or have relapsed in the last 12 months, you are invited to meet our research team at the Royal Victoria Infirmary in Newcastle on Thursday 28^th April 2022 between 1 pm-2 pm, where you will be given more information about this study. You will find us at our Clinical Research Facility at Leazes Wing on Level 6. Please contact the study team: [email protected] or 0191 2824636 beforehand to reserve a place.

Please note: Eligible participants proceeding to participate in the study might not receive full travel reimbursement if they are living at considerable distance from the study’s Newcastle base.

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. 

https://bit.ly/3alKV6e

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) (www.thyroid-fed.org), 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 (www.picker.org). 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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