September 2017 - The following are research projects involving young people with thyroid disease in the UK. This is not a comprehensive list and there are other projects underway or being planned.

Study of new treatment for Graves’ disease in children has started

The BTF is closely involved in the conduct of a new study looking to see if a trial drug called Rituximab will slow down or stop the thyroid gland making too much thyroid hormone in children. This trial will see if Rituximab can help make young people with Graves ‘ disease better when it is used together with a short course of carbimazole.

Dr Tim Cheetham from Newcastle University’s Institute of Genetic Medicine and BTF Trustee is leading a trial to find a cure for Graves’ in young people. In Graves' hyperthyroidism the thyroid produces too much thyroid hormone. Patients with this condition can have tiredness, sleeping problems, poor concentration and weight loss. It is difficult to treat Graves' in the young because the tablets available (carbimazole) have a number of side effects and yet do not usually cure the condition. Only 25% (one in every four) 12-20 year olds will be permanently better after a standard two year treatment. Other ways to treat this disease include surgery and radio-iodine. Surgery and radio-iodine can have significant risks and are not a cure because patients that have surgery or radio-iodine need to take thyroid hormone replacement. Rituximab is a medicine that is already used in other autoimmune conditions, such as rheumatoid arthritis. Centres that can recruit patients include Newcastle-upon-Tyne and Birmingham while additional units including Doncaster, Edinburgh, Leeds and Sheffield are expected to take part in the near future. For further details contact tim.cheetham@nuth.nhs.uk

 

The National BSPED Thyrotoxicosis Study

This study, supported by the BTF is looking at how best to administer anti-thyroid drugs (usually carbimazole in the UK) to children and adolescents with thyrotoxicosis. The study finished in 2015 and over 80 patients were recruited from around 15 centres in England, Scotland and Wales. The data is currently being put in the correct format so that analysis can begin. The medicine side-effect information is very important in this trial and we have been making sure that this is accurately categorised. The analysis of the data will be conducted by a professor in medical statistics at Newcastle University and will begin in the very near future. Many people will have heard about this trial over the years and we are sorry that analysing the data (and hence working out what the trial has taught us) is taking so long.

Contact: tim.cheetham@nuth.nhs.uk

The British Paediatric Surveillance study of congenital hypothyroidism (CHT)

This study has been looking at the incidence of CHT in the UK (how common it is) and other important issues such as what proportion of cases are temporary as opposed to permanent. The study will also provide information about how paediatricians manage the condition in the UK. The study is supported by the Royal College of Paediatrics and Child Health (RCPCH) and received backing from the BTF. We expect that results from this study will start to appear in the medical literarture in 2016-2017 which will be very exciting.

Contact: Rachel Knowles  r.knowles@ich.ucl.ac.uk

http://newbornbloodspot.screening.nhs.uk