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The Hyperthyroidism Research and Outcomes Information Database (THYROID)

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The Hyperthyroidism Research and Outcomes Information Database (THYROID)

Current treatment strategies for people with hyperthyroidism vary across centres in the UK. Antithyroid drugs (ATDs), radioactive iodine (RAI), and thyroidectomy have all been successfully used for over 70 years in the treatment of hyperthyroidism. The National Institute for Health and Care Excellence (NICE) recommends that RAI should be offered as first-line treatment for Graves’ disease. RAI is cost-effective, easy to administer, and effectively controls hyperthyroidism in up to 80% of cases. In addition, early control of hyperthyroidism with primary RAI therapy is associated with better long-term cardiovascular and survival outcomes compared to treatment with ATDs.

In practice, RAI is not widely used as initial therapy, and many endocrinologists continue to use ATDs as first-line. The reasons for RAI hesitancy are multifactorial. RAI is unsuitable for pregnant women, parents with young children, and patients with severe thyroid eye disease. In addition, RAI induces permanent hypothyroidism, and some patients may wish to avoid the need for lifelong thyroid hormone replacement after RAI. Lastly, a widely publicised 2019 study from the US reported increased cancer risk in RAI-treated patients with hyperthyroidism, raising public concern over the risk of cancer after RAI treatment.

Variable outcomes are also seen in patients with thyroid eye disease, which occurs in about 25% of patients with Graves’ disease. Affected patients suffer significant physical and psychological morbidity, which results in reduced quality of life. Severe cases may result in facial disfigurement and a risk of sight loss, with significant socio-economic consequences (14). Current management strategies include prompt recognition of cases, early referral to multidisciplinary specialist eye clinics, and the use of disease-modifying therapies. However, referral pathways, access to specialist eye services, and the availability of modern treatments may vary across centres as well as internationally.

There is therefore a need for treatment related outcome information in patients treated for hyperthyroidism. To date, such data in the UK have been limited to regional datasets that may not reflect the breadth of practice in the country, and may neglect important patient subsets, including younger patients, patients with thyroid eye disease, and individuals with rarer causes of hyperthyroidism such as Resistance to Thyroid Hormone-β (RTH-β). A recent study of patients with RTH-β in Wales highlighted an increased cardiovascular disease burden that was not mitigated by conventional hyperthyroidism therapies.

The Hyperthyroidism Research and Outcomes Information Database (THYROID) is a national clinical audit and research study for hyperthyroidism in the UK. The study will evaluate the safety, effectiveness, and outcomes of existing treatments across centres in the UK, encompassing individuals with hyperthyroidism, thyroid eye disease, and RTH-β. Prospective surveys will audit access to therapies and patient reported outcome measures (PROMS) while retrospective data linkage studies will establish the impact of treatment on long-term risks of cancer, cardiovascular events, orbital complications, and death. Information from THYROID will improve patient care and ultimately equip patients and their clinicians with the confidence to use safe and effective therapies for hyperthyroidism.

 

Dr Kristien Boelaert
Dr Simon Pearce
Dr Carla Moran
Dr Karen Mullan
Dr Carol Evans
Dr Richard Fernandez
Dr Fraser Gibb
Dr Onyebuchi Okosieme
Dr John Lindsay
Dr Rebecca Ford
Dr Michael Atkinson
Miriam Asia, Thyroid Specialist Nurse 
Julia Priestley, British Thyroid Foundation representative

The purpose of the study is to prospectively and retrospectively collect evaluate the safety, effectiveness, and outcomes of existing hyperthyroidism treatments in the UK.

Specific objectives are as follows:

1.     Evaluate current management of hyperthyroidism and RTH-β including (a) choice of therapy, (b) time to hyperthyroidism control, and (c) remission and cure rates.

2.     Evaluate the current diagnosis and management of thyroid eye disease including (a) prevalence of thyroid eye disease, (b) access to multidisciplinary specialist eye clinics, and (c) use of various medical therapies, orbital radiotherapy, and surgical procedures.

3.     Evaluate patient reported outcomes in patients with hyperthyroidism, RTH-β, and thyroid eye disease using disease specific (ThyPro, GOQol) and generic (EQ5L) quality of life measures.

4.     Evaluate the impact of hyperthyroidism and RTH-β treatment on long-term outcomes including (a) mortality, (b) cardiovascular events, and (c) cancer incidence and cancer mortality outcomes.

5.     Provide an up-to-date database of prospectively recruited clinically well phenotyped patients with hyperthyroidism, thyroid eye disease, and RTH-β that may inform recruitment to clinical trials.

Better understanding of particular concerns relating cancer risk and long term morbidity and mortality following radioiodine treatment and explain these compared with other treatments. Improved understanding of the effects on RAI on TED will help in patient choice of treatment. Working with the patient support group TEDct and the BFT to disseminate findings and look at service improvement projects

Feb 2026 – Feb 2028

Data is made available to researchers, patient support groups, pharmaceutical or medical device companies, and other health care professionals via the data access request form in line with the data access policy of the Society for Endocrinology.

You can find more information about governance here

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