The Hyperthyroidism Research and Outcomes Information Database (THYROID)

The prevalence of hyperthyroidism is 2% of women and 0.2% of men in the UK. Recent evidence indicates that the incidence of Graves’ disease, the most common cause of hyperthyroidism, has doubled between 2000-2002 and 2017-2019 (from 33.6 /100,000 person years to 66.2 /100,000 person years, Lancet 2023 PMID: 37156255).

Up to 25% of patients with hyperthyroidism develop significant thyroid eye disease (TED), which may be elicited or worsened by radioactive iodine (RAI) administration, especially in smokers. A number of promising new treatments for TED have recently been explored in clinical trials. It would be beneficial for health care professionals and patients to understand these better and the outcomes received from prescription of these treatments.

Approximately 30% of people with hyperthyroidism are treated with radioactive iodine, the other commonly used modalities being antithyroid drugs and surgery. We anticipate that this number will increase following the 2019 NICE guidelines.

We don’t have good data regarding the number of doses of radioiodine currently given annually in the UK since these data are not well recorded. There are published data that in 1982 there were 8,000 doses of RAI given and in 2003 there were 10,000 administered (DTB June 2006).

Radioiodine has been used to treat hyperthyroidism for more than 8- years and is generally considered a safe treatment. More recently some studies have indicated a possible link to development of solid cancers, especially at higher doses (JAMA Netw Open 2021 PMID: 34533571) 

Radioiodine is the NICE recommended treatment for most cases of hyperthyroidism. Current uncertainty about risks of RAI therapy (conflicting studies on cancer risk and patient fears about development of hypothyroidism) deters some patients from taking the therapy. A prospective database with ascertainment of new cancer diagnosis as well as morbidity and mortality through NHS-CR (digital) would inform this over a 5 and 10 year period, leading to improved patient confidence. Data regarding radioiodine administration and long term outcomes are particularly sparse in the younger age group. Retrospective and prospective data extraction of patients with hyperthyroidism treated with radioiodine, antithyroid drugs and surgery will highlight a combination of the impact of lifestyle habits,  the treatment modality used for hyperthyroidism, the use of prophylactic steroids and radioiodine dosing on TED.

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 data to support the conduct of audit and research on the safety, effectiveness, and outcomes of existing hyperthyroidism treatments in the UK.

Specific objectives are as follows:

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

2.    Audit 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 study 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

October 2025 to October 2027

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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