RecruitingInterventional

Red blood cell transfusion schedule in myelodysplastic syndromes

Myelodysplastic syndromes (MDS) are blood conditions where the bone marrow cannot produce enough healthy red blood cells. Many people with MDS need blood transfusions every three to four weeks to treat anaemia and boost their energy. However, blood counts can drop between these visits, causing tiredness and fatigue. Researchers at Newcastle upon Tyne Hospitals NHS Foundation Trust want to see if having smaller, weekly transfusions works better. They hope this approach will keep red blood cell levels steadier and make hospital visits shorter, lasting around two to three hours. The study lasts 12 weeks. Every person taking part will try both routines: six weeks of standard care and six weeks of weekly transfusions. You will wear a simple activity wristband, complete short walking and strength checks, and share your experiences to help improve future NHS blood transfusion services.

At a glance

Status

Recruiting

Sponsor

Monash University

Enrolment target

Start

01 Sep 2021

Estimated completion

31 Mar 2027

Myelodysplastic syndromes

What is this study about?

Myelodysplastic syndromes (MDS) affect the bone marrow's ability to make healthy blood cells. When red blood cell counts drop, it leads to anaemia, leaving people feeling exhausted and short of breath. For many years, the standard treatment has been receiving two or more units of blood every three to four weeks. While this helps, patients often notice a 'peak and trough' effect, feeling full of energy right after a transfusion, but progressively more drained as the weeks pass.

This trial is testing whether a weekly transfusion schedule could offer a better alternative. By giving smaller amounts of blood once a week, the aim is to keep haemoglobin (the protein that carries oxygen in your blood) at a more constant, healthy level. To make this practical, the team uses pre-matched blood so that hospital visits can be shorter—aiming for just two to three hours per session.

Over the course of 12 weeks, participants will experience both methods: six weeks on the usual schedule and six weeks on the new weekly schedule. By comparing how you feel, your physical activity, and your feedback during both periods, researchers hope to discover if weekly transfusions are practical, safe, and preferred by patients. This research could help design better, more personal transfusion plans across the NHS.

Key takeaways

Tests whether smaller, weekly blood transfusions work better than larger, monthly ones for MDS.
Lasts 12 weeks, with six weeks on your normal routine and six weeks on the weekly schedule.
Aims to reduce waiting times, with weekly hospital visits designed to last only 2 to 3 hours.
Includes gentle walking checks, handgrip tests, and wearing a simple activity wristband.
Completely voluntary—you can return to standard NHS care at any time.

Who may be eligible?

You may be able to join this study if you are aged 18 or older and have been diagnosed with MDS or a closely related blood condition. You must be dependent on regular red blood cell transfusions, generally needing at least one transfusion visit per month over the last two months, and expect to need them for at least another six months.

To take part, you need to be well enough to travel to hospital each week during the weekly phase. You will also need to be able to complete simple walking and handgrip tests, wear an activity band on your wrist, and answer questions about your health and daily life in English.

You cannot take part if you are taking certain disease-modifying medicines for MDS (such as azacitidine, lenalidomide, or hydroxycarbamide) or medicines that stimulate red blood cell growth. It is also not suitable for people with a significantly enlarged spleen, active bleeding, or complex blood antibodies that make finding matched blood very difficult.

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 am aged 18 or over and have been diagnosed with MDS or a related condition.
I receive regular red blood cell transfusions (usually at least once a month).
I am able and willing to travel to the hospital once a week for six weeks.
I am not currently taking disease-modifying drugs for MDS like azacitidine or lenalidomide.
I am able to do short walking tests and wear an activity wristband.

Answer every question to see your result.

What does participation involve?

If you take part, you will be in the study for 12 weeks. You will try both treatment options: six weeks on your usual transfusion schedule and six weeks on the new weekly schedule. A computer will randomly decide which schedule you start with.

During the study, you will have a clinic check-up every three weeks. At these visits, the study team will examine you, take routine blood samples, and ask you to fill in four short questionnaires about your wellbeing. You will also do a simple six-minute walking test and a quick handgrip strength test. You will wear a lightweight activity tracker (similar to a Fitbit) on your wrist to record your daily steps.

A small extra blood sample (about one teaspoon) will be taken at three points during the trial to check your iron levels. During your transfusions, the team will monitor your blood count, but they will keep your exact haemoglobin number private until the trial ends, so that expectations do not affect how you report your symptoms. Within three months after finishing, a researcher will phone you for a short chat to hear your thoughts on both schedules.

Potential risks and benefits

A potential benefit is having steadier energy levels without the deep dips in stamina that often happen between monthly transfusions. The weekly visits are also designed to be quicker, lasting only two to three hours. However, coming to the hospital every week can be tiring and time-consuming. You will also face standard transfusion risks, such as mild bruising from blood tests or slight transfusion reactions. Taking part is completely voluntary. You can leave the study at any point without giving a reason, and your normal medical care will continue unaffected.

Locations (6)

Freeman Hospital
Approximate
Newcastle upon Tyne, England
Royal Devon and Exeter Hospital
City only
Exeter, England
North Tyneside General Hospital
Approximate
North Shields, England
Uclh
Approximate
London, England
East Sussex Healthcare NHS Trust
City only
St. Leonards-on-sea, England
University Hospitals Plymouth NHS Trust
Unverified
Plymouth, England

Common questions

Do I have to choose which transfusion schedule I want to try?

No, you do not have to choose. All participants will try both the standard routine and the weekly routine for six weeks each, so you can compare how both feel.

Will going to the hospital every week take up my whole day?

The study team is specifically aiming to keep weekly transfusion visits short, usually lasting between two and three hours from start to finish.

Why won't the doctors tell me my haemoglobin results during the trial?

Keeping your haemoglobin score hidden (known as blinding) ensures that knowing your numbers does not accidentally change how energetic or tired you feel, making the study results more accurate.

What happens after the 12-week study ends?

You will return to your regular doctor. Because you will have tried both schedules, you and your doctor can discuss which routine you preferred and decide on the best way forward.

What does the activity tracker do?

It is a simple, comfortable band worn on your wrist that measures your daily movement and step count. You return it to the team at your final clinic visit.

How to find out more

Andrew Charlton

Andrew.Charlton1@nhs.net +44 191 213 8518 Official trial record

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