The BTF is a patient-led organisation and we're often asked by medical and other professionals for help with research projects. Where possible the results and findings of these projects will be published in the BTF newsletter and on this website.
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.
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. To find out more about the study and to access the questionnaire please follow this link.
This study has now stopped recruiting for patients. Thank you to everyone who took part. We will report on the results on 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 travelling 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.
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]
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]
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]
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