Dear BSBMTCT member,

We hope you are all well and enjoying the continuing sunshine. Here are some important updates for you.

Building the future of transplantation and cellular therapy data – funding approved

We are delighted to confirm that the funding arrangements for an important new programme to explore the future of transplantation and cellular therapy data in the UK have now been agreed, subject to contract.

Working with Anthony Nolan as lead organisation and BSBMTCT as delivery partner, we have secured support through the Department of Health and Social Care (DHSC) Discovery Fund, via NHS Blood and Transplant (NHSBT), to undertake a structured discovery programme and develop an evidence-based business case for a future UK HSCT and Cellular Therapy Outcomes and Learning Ecosystem.

Alongside this, Sanofi has agreed to provide financial and in-kind support to the programme through a Collaborative Working Project including grant and in-kind project management resource. This will provide additional capacity and expertise to support the discovery and business-case work.

This is an important milestone for BSBMTCT and for the wider UK transplantation and cellular therapy community. It represents a significant opportunity to build on the strengths of the existing BSBMTCT Registry and the many other valuable data assets that already exist across the UK, while considering how these could work together more effectively in the future.

Why do we need this work?

Transplantation and cellular therapies have changed enormously over the last two decades. The increasing use of unrelated and haploidentical transplantation, post-transplant cyclophosphamide (PTCy), CAR-T therapies, gene therapies and other advanced therapy medicinal products (ATMPs) has created new opportunities for patients, but also increasingly complex questions about outcomes, access, equity, long-term follow-up, safety, effectiveness and value.

Our data infrastructure has not evolved at the same pace. The UK has an extraordinary collection of valuable data assets: the BSBMTCT Registry; donor and matching information held by Anthony Nolan, NHSBT, WBMDR and DKMS; cellular collection, processing and supply-chain information; NHS datasets; disease-specific registries; patient-reported outcome and experience initiatives and electronic patient records.

Each of these assets has a purpose and is individually valuable. Collectively, however, they have the potential to provide much greater insight. At present, they have largely developed independently, for different purposes and within different organisational and governance arrangements. This means that we do not have a single, coherent view of the patient journey from referral and donor identification, through treatment, to long-term outcomes and survivorship.

The challenge is therefore not simply to replace or enhance the existing BSBMTCT Registry. It is to understand how we could create a connected ecosystem in which relevant information can be linked and used appropriately, while retaining the important specialist roles and governance arrangements of the organisations and datasets involved.

What will the programme do?

The Discovery programme will take a whole-system approach. Working with Anthony Nolan, NHSBT, transplant centres, patients and carers, researchers, data and registry specialists, industry partners, policymakers and other stakeholders, we will first map the current data landscape and understand how information currently flows through the transplantation and cellular therapy pathway.

We will look at where data are collected, where duplication occurs, where important information is missing or difficult to access, and where opportunities exist to improve interoperability and automation. We will also consider the burden placed on clinicians and data managers and how future approaches could reduce the need to enter the same information repeatedly.

The next stage will focus on co-designing what a future ecosystem should actually deliver. This will include defining the priority use cases, functional capabilities and data requirements needed to support clinical care, outcomes monitoring, research, quality improvement, commissioning, regulatory requirements and real-world evidence. We will also consider how PROMs and PREMs, long-term survivorship information, NHS datasets, donor and supply-chain information and research infrastructure could fit within the future model.

Importantly, this is not a commitment to building one enormous database containing everything. The guiding principle is: “Collect once, use many times.” The aim is to explore how relevant information could be connected, governed and reused appropriately to generate greater value from the data that the community already collects.

The programme will also examine the practical conditions required for success. This includes governance and information governance, legal and regulatory requirements, interoperability and technical architecture, workforce and analytical capability, relationships with international partners such as EBMT, sustainable operating and funding models, and the options for implementation.

The ultimate output will be a comprehensive, stakeholder-informed business case setting out a future vision, requirements, governance and operating models, technical options, workforce requirements, implementation roadmap, costs, benefits, risks and potential funding and sustainability arrangements. The intention is to provide Government, NHS organisations and future funders with a robust evidence base for decisions about any subsequent investment.

A complementary James Lind Alliance Priority Setting Partnership

Alongside the ecosystem discovery work, we will also be developing a funded James Lind Alliance (JLA) Priority Setting Partnership. This will ask a complementary question: what are the most important unanswered questions for patients, carers, clinicians and researchers in transplantation and cellular therapy?

The distinction is important. The JLA process will help identify and prioritise the questions that matter most. The ecosystem programme will then help us understand what infrastructure, data and capabilities would be required to answer those questions. Together, these strands should help ensure that any future data infrastructure is designed around the needs of the community rather than simply around the capabilities of a particular technology or database.

How can members contribute?

The success of this programme will depend on the engagement of the transplantation and cellular therapy community. We want to hear from centres about the questions you are struggling to answer, the data you already collect, where the greatest burden lies, what information you need but cannot currently access, and what capabilities would make the biggest difference to clinical practice and research.

We also want to understand what success should look like in three to five years. Could centres spend less time entering data? Could key information flow automatically from electronic patient records? Could researchers identify appropriate cohorts more quickly? Could clinicians benchmark outcomes more effectively? Could patients contribute PROMs and PREMs digitally? Could commissioners and regulators receive more timely evidence about access, outcomes and emerging therapies?

These are not simply technology questions. They are clinical, research and patient questions. The data ecosystem is the infrastructure that could help us answer them.

We are therefore very pleased to have reached this important stage. The funding provides the opportunity to undertake the work properly, with the breadth of expertise and engagement that it requires. It does not predetermine the final solution. Instead, it gives the community an opportunity to understand the current landscape, define what is needed, assess the options and develop a credible, sustainable and evidence-based proposition for the future.

Ultimately, this should not be a BSBMTCT technology or registry project. It should be research and learning infrastructure, designed around the questions our community needs to answer, and built and owned by the community.

 UK Stem Cell Strategic Forum (UKSCSF) and the Department of Health and Social Care (DHSC) Updates

The UK Stem Cell Strategic Forum Oversight Committee meeting was held on Friday 4 September. The key priorities of this forum are equity of access to cellular therapies and ensuring the research and development infrastructure exists to support this for our patients. Some important summaries of this meeting included:

• DHSC review and survey update – the review is still underway, and the survey has been extended to 30 September. A workshop for the stakeholders and panel will be held on 17 November to test evidence and actions, to share the key findings and to shape the final recommendations.
• Post Transplant Cyclophosphamide (PTCy) Update – the BSBMTCT Consensus Guidelines will be reviewed and updated. The BSBMTCT registry will provide baseline data to be reviewed and discussed at the Anthony Nolan Retreat on the 2 October. This will support the community to understand the uptake and impact of PTCy in our patient populations.
• Delivery Group 1-4 updates – each group listed below reported on their progress.

 Delivery Group 1 – Sustainability and resilience of the stem cell donor supply chain

Delivery Group 2 – Equity of access and patient experience

Delivery Group 3 – A new vision for HSCT and ATMP data

Delivery Group 4 – UKSCSF Global leadership in HSCT and ATMP research

The UKSCSF report including all the updates above in detail is currently in progress and is hoped to be published by the end of the year. We will notify members when it is available.

Thank you to the Chair, Professor Charlie Craddock and the Secretariat (Anthony Nolan and NHSBT) for all their hard work in organising this important forum.

BSBMTCT AI and Technology Champion

Just a reminder that the Nominations close at midnight on Friday 2 October. If you have not seen the nomination papers and would be interested in the role, please contact our Head of Registry, Julia Lee, at julia.lee@kcl.ac.uk.

Clinical Trials Sub-Committee (CTSC) Meeting

Thank you to everyone who attended the CTSC meeting on 23 September. It was great to hear updates from all our current studies and collaborators.

Here are just some of the studies that are at the manuscript stages:

• Case matched study evaluating the impact of prior PD1/PDL1 inhibition on transplant outcomes in patients with Hodgkin Lymphoma undergoing T-deplete alloTx – Maria Marzolini
• Pregnancy outcomes following Haematopoietic Stem Cell Transplantation with or without total body irradiation: a systematic review and retrospective UK data-linkage cohort study – Kate Birchenall
• Outcomes of germ cell tumour patients treated with high dose chemotherapy/autologous stem cell transplant in the UK – Robin Young
• Autologous stem cell transplantation for teenagers and young adults with Hodgkin lymphoma: A BSBMTCT registry study – Graham Mcllroy

We are planning to have our next CTSC on Wednesday 17 March 1-3pm, via MS Teams.

Do keep an eye out in our publication list: https://bsbmtct.org/publications/

BSBMTCT Education Day – Thursday 5 November 2026

We are looking forward to our next Education Day, which will be held on Thursday 5 November 2026. The agenda is now available and registrations are open.

View the agenda and register here – Collaborative Conferences

BSBMTCT Membership Invoices 2026

Thank you to everyone who has already paid their first membership invoice of £3,250.

All allograft centres will receive a second invoice of £2,200 during October 2026.

BSBMTCT Meeting Grants 2026/2027

We are delighted to announce that we will shortly be announcing our next round of meeting grants. We have £10,000 allocated to support staff from member centres to attend meetings such as EBMT Congress 2027. Details to follow soon.

Changes to staff emails and contacts

Please let us know if there have been any changes to your team or contact details so that we can keep our membership records up to date. There is no limit to the number of staff members you can add to your BSBMTCT membership. Please send any changes or additions to Alex Slade at alex@collaborativeconferences.co.uk.

Your views are vital to us

BSBMTCT is a membership organisation, and our role is to listen to you, our members.

If you have any thoughts, ideas or anything else you would like to share with us, please do get in touch with Julia Lee at Julia.Lee@kcl.ac.uk and/or David Reynolds at David.1.Reynolds@kcl.ac.uk.

Dates for your Diary for 2026

Our very best wishes, Deborah Richardson, Eduardo Olavarria, Fiona Dignan, Harpreet Kaur, Victoria Potter, David Reynolds & Julia Lee