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.
Thyroid patients and COVID-19 pandemic
This survey is now closed. Thank you to all the patients who took part and shared their experiences. We are analyzing the findings and will publish the results on our website in due course. In the meantime we are working hard to respond to the requests and suggestions about new ways we can provide support for patients at this time.
We have been approached about an opportunity for patients to take part in a clinical trial investigating a new drug for Graves’ disease.
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.
A Safety Review Committee found the drug to have been safe and well-tolerated in the patients treated so far. The company is now actively recruiting for their final cohort so please contact the sites before the end of May 2020.
Travel to and from the study sites is provided from a patient’s chosen location, as well as accommodation for patients travelling from far.
If you would like some more information or are interested in taking part, please contact:
They will be able to answer any questions you may have and book you in for a more in-depth discussion.
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]
The BTF is on the steering committee of a research study being conducted by City, University of London to improve the way newborn screening results are communicated to parents when they have received a result which suggests their baby may have a thyroid condition.
The study group is currently looking for parents of babies:
If this is you and you would like to find out more information, please directly contact Dr Jane Chudleigh at j.chudleigh@city.ac.uk for more information.
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]
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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