How to find information

Your cancer specialist or specialist nurse should be able to tell you about trials in your area, and they may know of other trials that might be suitable for you. Not all hospitals have the facilities or expertise to take part in some trials, so you may have to travel to a different hospital.

If you’ve been invited to take part in a clinical trial, you may be introduced to a research nurse. They can tell you all about the trial and answer your questions.

You can search for trials in the UK on websites such as:

• Cancer Research UK  http://www.cancerresearchuk.org/about-cancer/trials/
• National Cancer Research Network  http://www.crn.nihr.ac.uk/can-help/patients-carers-public/find-a-clinical-research-study/

IoN Study (Iodine or Not)

The IoN (Iodine or Not) study is a large national study in the UK. We would like to see whether low risk patients need radioactive iodine (RAI) ablation to reduce the chance of the cancer coming back, when they have already had the two other upfront usual treatments for thyroid cancer, which are total thyroidectomy (whole thyroid gland removed) and thyroid stimulating hormone suppression (TSHS) therapy. In the IoN study, all patients would have these two upfront treatments, then half of them would also receive RAI ablation, and the other half would not.

For all patients in the study the whole thyroid gland would have been removed by a specialist surgeon. In addition, patients are followed up regularly and very closely (every six months for five years) using a combination of clinical examination, modern sensitive blood tests, and neck scans. Other tests and scans would be performed when required.

The chance of the cancer coming back in these patients is low, less than 5% over five years and almost always in the neck (in fact, published research indicates that it is <2%). Even if the cancer does come back in this small number of cases, they are readily detected early by the tests and scans used in the IoN study, and are adequately treated and almost always cured. This avoids unnecessary treatment of up to 98% of patients with upfront radioiodine.

If the chance of the cancer coming back is similar between patients who had RAI ablation and those who did not, then future patients can avoid RAI therapy, and its potential side effects.

IoN has been approved and funded by Cancer Research UK.

About 30 hospitals across the UK are taking part in the trial, and the following clinicians and hospitals are already recruiting patients:

Bristol - Bristol Haematology & Oncology Centre (Dr Matthew Beasley)
Cambridge - Addenbrooke's (Dr Sarah Jeffries)
Canterbury - Kent and Canterbury Hospital (Dr Elena Macias Fernandez)
Cardiff - Velindre Cancer Centre (Dr Laura Moss)
Chelmsford – Broomfield Hospital (Dr Abdel Hamid)
Cheltenham - Cheltenham General Hospital (Dr Charles Candish)
Edinburgh – Royal Infirmary Edinburgh (Dr Mark Strachan)
Exeter - Royal Devon & Exeter Hospital (Wonford) (Dr Andy Goodman)
Glasgow - Beatson Oncology Centre (Dr Nicholas Reed)
Guildford - Royal Surrey County Hospital (Dr Stephen Whitaker)
Ipswich - Ipswich Hospital (Dr Christopher Scrase)
Leeds - St James's Hospital (Dr Georgina Gerrard)
Leicester - Leicester Royal Infirmary (Dr David Peel)
London - Royal Marsden Hospital (Dr Kate Newbold)
London - St Mary's Hospital (Dr Danielle Power)
London – Guy’s Hospital (Dr Hosahalli Mohan)
Maidstone - Kent Oncology Centre (Dr Nick Rowell)
Manchester - The Christie (Prof Nicholas Slevin)
Middlesbrough - James Cook University Hospital (Dr John Hardman)
Newcastle - Freeman Hospital (Dr Ujjal Mallick)
Norwich - Norfolk & Norwich University Hospital (Dr Tom Roques)
Nottingham - Nottingham Hospital (Dr Sally Morgan)
Poole - Poole Hospital (Dr Perric Crellin)
Portsmouth – Queen Alexandra Hospital – (Dr Dae Kim)
Sheffield - Weston Park Hospital (Dr Jonathan Wadsley)
Southend-on-Sea - Southend Hospital (Dr Krishnaswamy Madhavan)
Wolverhampton - New Cross Hospital (Dr Mano Joseph)

Additional centres may have been added since this information was put on the website so if you would like to take part in this trial please speak to your clinician.

QaLM

QaLM: Assessment of Quality of Life Tools in Medullary Thyroid Cancer Patients

Medullary thyroid cancer (MTC) presents as a sporadic tumour in approximately 75% of cases and as an inherited disease in 25%. The inherited forms of MTC constitute part of the Multiple Endocrine Neoplasia disorders. Patients with Multiple Endocrine Neoplasia (MEN) may therefore have a number of medical conditions which can impact on their quality of life. It can be difficult to fully appreciate the impact of a cancer diagnosis or an inherited syndrome, raised and rising tumour markers and disease symptoms on a patient’s quality of life.

Aims

The aim of the study is to determine which Health Related Quality of Life (HRQoL) instruments patients with sporadic and inherited medullary thyroid cancer and early and advanced stage medullary thyroid cancer find most helpful in facilitating communication of their health problems to their clinicians. The study will attempt to ascertain if medullary thyroid cancer patients’ symptoms and quality of life is better assessed by a thyroid cancer specific questionnaire, a general symptom questionnaire or a neuroendocrine tumour specific questionnaire.

The study will also ascertain clinician’s views on the quality of life tools in terms of their ability to highlight problems not otherwise ascertained by a standard clinical review appointment along with the relationship between quality of life tool score, performance status and clinical significance.

Trial Design

Patients will be randomised to complete four quality of life questionnaires in different sequences and then will be asked questions about which questionnaire they prefer in a final brief questionnaire.

Eligibility: 200 patients required

• Patients 16 years old or over who have a diagnosis of medullary thyroid cancer (inherited or sporadic)

Patients can be included at any time point after diagnosis.

 Outcome Measures

• Identification of medullary thyroid cancer patients’ preferred quality of life instrument for describing their concerns and for facilitating communication with their health care professional.

• Assess if there are differences between preferred quality of life tools amongst patients with sporadic and inherited forms of MTC.

• Assess for any emerging patterns between questionnaire responses and a patient’s clinical situation.

Assess clinicians’ views on the quality of life tools in terms of their ability to highlight problems not otherwise ascertained by a standard clinical review appointment.

Trial Logistics

 A number of clinicians across the UK have expressed interest in taking part and we are currently in the process of trying to open the study in 21 centres.

The QaLM study has been funded by AMEND (Association for Multiple Endocrine Neoplasia Disorders)

Thyroid Cancer Forum UK