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.
Sometimes people can have long-lasting symptoms where the cause cannot be explained by medical investigations or tests. These are called Medically Not Yet Explained Symptoms (MNYES) or medically unexplained symptoms. Some of the symptoms overlap with those experienced by some thyroid patients and can include fatigue, pain, stomach or bowel problems and problems with movement (such as tremors, shakes and weakness). MNYES is relatively common. It is thought that 10-30% of GP appointments are made in relation to MNYES.
The James Lind Alliance is a group of patients, carers, clinicians, and researchers who want to improve the care and quality of life of patients with MNYES. It has set up a Priority Setting Partnership on MNYES. The aim is to give you the opportunity to identify the most important questions you would like to see answered in future research in this area.
They are inviting people with experiences of MNYES to complete a 10 minute survey. This is your opportunity to ask the questions you would like to see prioritised in research to help improve future diagnosis and care.
Take part in the survey
About the James Lind Alliance
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. 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.
They will be able to answer any questions you may have and book you in for a more in-depth discussion.
This patient 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.
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
Donate
Become a member