Details of recent trials we have been involved with

Thyroid nodules survey

Thank you to everyone who shared their experiences of thyroid surgery survey either through our online questionnaire or through a focus group. The fantastic response will help researchers at the University of Birmingham who are designing a new clinical trial to improve outcomes for patients who may need surgery. 

Patient experience of thyroid surgery and thyroid cancer in the UK

Thank you to everyone who responded to our 2023 surveys asking for feedback about your experience of treatment for thyroid cancer and thyroid surgery. 

The hundreds of responses we received gave us an invaluable insight into the experiences you went through, what went well, which aspects of treatment and care urgently need to be improved and how you felt about the treatments.  They also gave us a wealth of evidence to present to audiences of medical professionals at the British Association of Endocrine and Thyroid Surgeons in Athens and the Society for Endocrinology's British Endocrine Societies meeting in Glasgow. 

Clinical trial for people due to have thyroid surgery

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

What is the NIFTy trial about? 

The trial aims 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

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

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

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]

Labour Market and Wellbeing Implications of Thyroid Disease

BTF survey on the impact of Covid-19 on people with thyroid disorders

Thank you to everyone who took part in our survey to share your experiences of how Covid-19 has affected your wellbeing as well as access to care.

The findings can be viewed on the link below

BTF Covid-19 survey

BTF online survey: Patient satisfaction and quality of life in hypothyroidism

People who are treated for hypothyroidism (underactive thyroid) quite commonly report dissatisfaction with their treatment and impaired quality of life (QOL). Thank you to the nearly 1000 hypothyroidism patients who shared your own experiences in our online survey. You can read a summary by Dr Anna Mitchell and the full report below.

Summary of BTF patient satisfaction & QOL survey by Dr Anna Mitchell

Full report BTF patient satisfaction & QOL survey

RESPoND study