Surveys

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.

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]

Liothyronine (T3) prescribing patterns in England

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:

• aged between 3-36  months
• initially identified as potentially having a thyroid condition but upon further testing were found not to have the condition (a false positive)
• initially identified as potentially having a thyroid condition and upon further testing were found to have the condition (a true positive)
• were seen at King’s College Hospital, Guys and St Thomas Hospital or Birmingham Women and Children’s Hospital. 

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.

Patients needed for Graves’ disease research study

Illingworth Research Group Ltd is coordinating a phase I study investigating a potential new drug, K1-70, developed to treat patients who have Graves’ disease, thyroid cancer, and patients who would benefit from controlling thyroid stimulating hormone receptor activity. A Safety Review Committee found the drug to have been safe and well-tolerated in the patients treated so far.

A further eight patients with Graves’ disease are needed to complete this study. Travel to and from the study sites is provided from a patient’s chosen location, as well as accommodation for patients travelling from far. For more information, please contact:

• volunteer Services team at the Medicines Evaluation Unit on 0800 655 6553 and quote study MEU 15/304
• recruitment Team at the Royal Liverpool and Broadgreen Clinical research Facility between 8.00 and 16.00 on 0151 706 4863 and quote study CRU/5464 or text CRU/5464 to 07342065915

Main inclusion criteria

• age 18-75 years, male or female
• have Graves' disease and are being treated with anti-thyroid medications OR not treated with anti-thyroid medications (due to side-effects) and who are clinically and biochemically euthyroid or hyperthyroid
• have a body mass index (weight [kg]/height [m]2) between 18.5 and 35.0 kg/m2

Main exclusion criteria

• current or chronic history of liver disease
• history of cancer within the last 5 years except localised skin cancer
• Graves' orbitopathy with clinical activity score >3/7
• evidence of optic neuropathy and/or corneal breakdown
• significant systemic infection
• history of recurrent or current infection
• splenectomy
• recently had major surgery or plan major surgery
• had thromboembolic event due to a blood clot in the last 12 months
• have clinically significant laboratory tests
• a clinically significant allergic condition (excluding hay fever)
• currently receiving corticosteroids
• smoke more than 10 cigarettes (or its equivalent) per day
• history of drug abuse
• pregnant women and male subjects with pregnant female partners

Study of Graves' disease in young people

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 2020.

Recruitment to this study is closed but if you would like information regarding the background to the trial please contact Tim Cheetham 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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