The events of the past few months have highlighted just how little is known about the effects of vaccinations for patients with aplastic anaemia, PNH or with both conditions. Faced with uncertainty about whether they should have the Covid-19 vaccination, patients have been desperately seeking concrete answers.

The Aplastic Anaemia Trust has received a huge volume of questions and calls, and updating our guidance on the vaccine has been an essential service. In January 2021, visits to our vaccine advice page accounted for over a quarter of our page views and it received well over twice as many visits as our homepage. We know uncertainty around the vaccine has been a real source of stress and uncertainty for our community. 

That’s why we are so thrilled to announce that we will be funding a new research study into the Covid-19 vaccination response in patients with aplastic anaemia and/or PNH.

This research will be conducted by the PNH team at the University of Leeds, and delivered in partnership with our friends at PNH Support.  

This research will be of great value to our patient community who have been facing the question of whether Covid-19 vaccines are effective for them.

Maria Piggin, Chair of PNH support

This research will investigate whether the Covid-19 vaccinations are effective in patients with aplastic anaemia and PNH, and will look at all current Covid-19 vaccines available. It will look at differences that can be measured in the immune system response between patients with these conditions and healthy volunteers. The PNH National Service will also collect clinical diagnostic data and record vaccination outcome. For the first time, we can build a picture of how patients respond to the vaccine and any changes to the course of the patient’s disease that might be attributed to it. 

With the Covid-19 vaccination being rolled out quickly across the country, everyone is keen and ready to get this research project running as quickly as possible. This study will run through the Leeds PNH Research Tissue Bank and samples are already available to begin the research. Leeds University, the PNH National Centre and the PNH Research Tissue Bank are ready to start the study as soon as possible.  

It is important to understand the effectiveness of the generation of a specific SARS-CoV-2 antibody response in patients with AA and PNH by the current COVID-19 vaccination program. This timely funding, together with the expertise of the PNH National Service and the established PNH Research Tissue Bank, will enable us to quickly generate this data, to evaluate the benefits of vaccination in these patients.

Dr Darren Newton, Lecturer in Haematology and Immunology, who applied to The AAT for this research funding.

One of the reasons this research will be quick to begin and affordable for The Aplastic Anaemia Trust to fund, is because it will utilise existing data that is already being collected. This means we do not need to recruit volunteers for this study.  

Funding this piece of research will cost £15,000. The Aplastic Anaemia Trust would like to say a huge thank you to our fundraisers who have stepped up to raise money for us so creatively during lockdown. Your hard work means we are able to fund exciting and urgent research opportunities like this, which will have a huge and far-reaching impact on the lives of aplastic anaemia patients.  

We are so pleased to have been able to respond quickly to this opportunity and to fund this research. We believe this will have a huge impact on the lives and wellbeing of our community, and potentially shed light on how aplastic anaemia affects a person’s vaccine response for other vaccines too.

Stevie Tyler, CEO of The Aplastic Anaemia Trust

We are so excited to fund this research, and we very much look forward to sharing the results with you.   

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Please note that all aplastic anaemia patients should consult with their clinical team and follow their advice about whether you should have the Covid-19 vaccine. We would advise you to take the vaccine if you are recommended to have it. The Aplastic Anaemia Trust’s Covid-19 vaccination page is kept up to date with the latest clinical guidance, and you can contact us for support.

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If you'd like to be a part of funding research projects like this, then why not join in with a spot of fundraising or make a donation to our Super Rare appeal?