RecruitingObservational

Blood cancer clinical trials long-term follow-up using integrated Healthcare Systems Data

Following clinical trial patients over many years can be tiring and time-consuming, requiring extra hospital appointments and paperwork. The BLISS study explores a simpler way by linking existing trial records with routine NHS health data. Researchers at the University of Leeds are looking back at information from ten completed multiple myeloma (a type of bone marrow cancer) trials run between 2008 and 2021 in England. By connecting past trial information with routine NHS records, such as hospital visits and national registries, researchers can check how well treatments worked over the long term. This approach protects patient privacy by removing personal names before researchers analyse the data. If you took part in one of these trials, you do not need to attend any appointments or take any medication. You are included automatically, but you can opt out at any time if you prefer.

At a glance

Status

Recruiting

Sponsor

University of Leeds

Enrolment target

5,517

Start

13 Feb 2026

Estimated completion

31 May 2028

Multiple myeloma

What is this study about?

Multiple myeloma is a type of blood cancer that develops from plasma cells in the bone marrow. Thanks to newer treatments discovered through clinical trials, people are living much longer. However, following trial patients over ten or twenty years usually means lots of extra hospital visits, tests, and forms. This can be exhausting for patients and costly for the NHS.

The BLISS study is testing a better, gentler way to follow patients over the long term. Instead of asking people to come back to the hospital, researchers are connecting past clinical trial data with routine health records already held by NHS England. This includes information on hospital visits, treatments, and general health outcomes that doctors record as part of everyday care.

Researchers at the University of Leeds are focusing on ten completed multiple myeloma trials run between 2008 and 2021. By checking routine NHS records against trial findings, they can learn how treatments held up over time, how bone health was managed, and whether routine NHS data can reliably replace extra research visits in the future.

Ultimately, this study aims to make future blood cancer research kinder and easier for patients. It will help doctors find answers to vital long-term health questions without placing extra burdens on people living with myeloma.

Key takeaways

The BLISS study looks at routine NHS data from patients who joined ten specific myeloma trials between 2008 and 2021.
It aims to make future clinical trials easier and less tiring by using existing NHS records instead of extra hospital check-ups.
There are no hospital visits, blood tests, or new medications involved.
Your data is kept secure and will be de-identified so researchers cannot see your personal details.
You can easily opt out at any time without affecting your medical care.

Who may be eligible?

This study is only for people who took part in one of ten specific multiple myeloma trials run by the Leeds Clinical Trials Research Unit between 2008 and 2021. These trials include Myeloma X, Myeloma XI, and the MUK trials (MUKOne, MUKThree, MUKFour, MUKFive, MUKSix, MUKSeven, MUKEight, and MUKTwelve).

To be included, you must have joined one of these trials at an NHS hospital located in England. If you took part at a hospital outside England, or if you previously withdrew your consent for your data to be collected, you will not be included.

Because this is a data-only study looking at past trials, researchers are not recruiting new patients who have never been on these specific trials. If you took part in the past, you are automatically included unless you choose to opt out.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

I was diagnosed with multiple myeloma.
I took part in one of the ten Leeds trials (such as Myeloma X, XI, or MUK 1, 3, 4, 5, 6, 7, 8, or 12).
I joined the trial at an NHS hospital located in England.
I was enrolled in the trial between 2008 and 2021.
I have not previously asked for my trial data to be withdrawn.

Answer every question to see your result.

What does participation involve?

Taking part does not involve any hospital visits, medical tests, blood samples, or changes to your current healthcare. You do not need to take any new medications or fill out any surveys.

Instead, researchers will securely share basic details (like your NHS number, date of birth, and sex) with NHS England to locate your health records. Once matched, your personal details are removed so that researchers only see anonymised medical information. The study will run from February 2026 until April 2030, but it requires no active effort or time from you.

Potential risks and benefits

There are no physical risks, medical side effects, or travel burdens involved in this study. The main consideration is data privacy. To protect your confidentiality, the study has strict approvals from the Health Research Authority and the Confidentiality Advisory Group, and researchers will never see your name on the analysed data. While taking part will not change your personal care today, it could help make future cancer trials simpler, cheaper, and less tiring for other patients. You have the right to opt out at any time without giving a reason, and doing so will never affect your normal NHS care.

Locations (1)

University of Leeds
Approximate
Leeds, England

Common questions

Do I need to attend any appointments?

No. This is a data-only study. You do not have to visit a hospital, see a doctor, or fill out any forms.

What if I took part in a different myeloma trial?

Only people who joined one of the ten listed Leeds trials in England between 2008 and 2021 are included in this study.

How is my personal information protected?

A limited amount of information, like your NHS number, is shared securely with NHS England to find your records. All personal details are then removed so researchers only work with de-identified data.

How do I opt out if I do not want my data used?

You can opt out easily by visiting https://ctru.leeds.ac.uk/bliss/ or emailing the research team directly at Ctru-bliss@leeds.ac.uk.

Will opting out affect my current NHS treatment?

Not at all. Choosing to opt out will have no impact on your relationship with your healthcare team or the care you receive.

How to find out more

Sharon Gillson

s.m.gillson@leeds.ac.uk - Official trial record

Always speak to your GP or specialist before deciding to take part in a study.