Donor focused research
What is donor focused research?
While we know that donating stem cells for many donors is a positive and rewarding experience, we want to continually improve their experience pre, during and post donation, as well as address any concerns they might have.
Our research directly involves our donors, and it’s their first-hand experience of interacting with us as an organisation that helps us understand how to improve our services. This allows us to robustly test possible solutions that can be used to change our standard practice for the benefit of all our donors.
What do our researchers do?
Our research is led by Anthony Nolan staff members supported by our Donor Research Coordinator and a research proposal evaluation process. Through this approach, suggestions and ideas to improve the donor experience are assessed and evaluated. This makes sure the best possible approach is undertaken to answer the questions we tackle in our research.
We work with our medical officers, collection centres, donors, and staff to collect relevant clinical and demographic data. We also carry out questionnaires and focus groups to capture the opinions of our donors and healthcare professionals, as well as perform retrospective studies that use historical data to study specific donor populations or individual aspects of the donation process.
This approach means that any recommendations we make, including those that require financial investment, are validated by factual evidence so we can be more confident that they will have a significant impact on donor wellbeing.
What impact will this have for donors?
It’s only through continual evaluation and analysis that we can be sure the services we provide are meeting the needs of our donors. We cannot facilitate lifesaving transplants without the help of our donors, so it is essential we take care of their physical and mental wellbeing before and after they donate.
Ensuring all our donors are looked after throughout their journey also means that more patients are likely to receive stem cells from their most suitably matched donor for their transplant.
All our research findings are shared with other donor registries and transplant communities so that we can share our knowledge and experience. This will help to improve the standards of care for donors worldwide.
Get involved in our work
Are you someone who has donated your stem cells and would like to help us improve our services for future donors? Please get in touch to hear about the possibility of joining our Donor Panel.
Group leader profile
Dr Chloe Anthias
- Dr Robert Danby – Chief Medical Officer
- Dr Rosalina Naidoo – Medical Officer
- Dr Angharad Pryce – Medical Officer
- Holly Pullinger - Service Improvement Coordinator
- Andrew Court – Service Improvement Lead
- Paul Johnson – Head of Registry Services
Current research projects
Young Donor Project
We know from our own research that stem cell transplants that use adult unrelated donors are more likely to be successful if the donor is younger. While many studies have demonstrated that young adults are able to donate safety, little is known about the reliability and availability of younger donors, many of whom are still in full time education, as well as the potential psychological impact of donating at a young age.
To address this gap in our knowledge, we conducted a retrospective analysis of over 1,000 donors on our register. The donors were separated into groups, based on their age, to identify possible ways in which their ability to donate or their donation experience differed.
The study has shown that younger donors are as reliable as older donors in responding to our testing requests and can consistently donate enough stem cells for transplants to go ahead. There was no increased risk of side effects or complications post-donation and they showed good long-term physical and mental recovery.
Overall, 16-22-year-olds are reliable and effective donors, with good emotional recovery, indicating a level of maturity necessary for the experience. The study supports our ongoing inclusion of unrelated donors to the registry from 16 years onwards.
A copy of the full report is also available on request.
Donor Communications Project
This ongoing piece of work focuses on how we communicate with our donors as they go through the stem cell donation process. It provides us with a better understanding of which platforms are the most suitable, and why, for specific donor audiences. It also allows us to determine the effectiveness of the information all our teams provide to our donors.
We are committed to involving our donors at every stage of the project. We hold regular focus groups with a diverse demographic of donors to gather opinions and ideas on how we can improve our communications. We are particularly interested in exploring news way of communicating, making sure all our donors can easily access the information they need.
The impact of COVID-19 on donor search requests, verification typing and donation of unrelated donor stem cells
The COVID-19 pandemic led to major changes to the way that transplant centres and donor registries operated to reduce the risk of infection to both patients and donors. National and international guidelines recommended that only urgent transplants were conducted during this time. Cryopreservation was recommended for all donations before patients started conditioning therapy to ensure there was a guaranteed source of stem cells source present. This minimized the risk to patients from disruption caused by transport delays or the donor needing to isolate. Back-up donors were also recommended for all planned transplants.
These changes have the potential to cause great disruption, so the UK aligned registries (which includes Anthony Nolan, NHSBT and DKMS) have launched this new study to measure their impact.
In particular, the study will focus on:
- How many donor search requests were made and how many donor verification typing tests were performed.
- The time taken to prepare donors for their donation.
- The number of transplants performed.