Summary of key points:

1) All CCLG (Children's Cancer and Leukaemia Group) paediatric centres have now approved the collection and sending of blood/marrow from children with AA to the Cell Bank in Manchester. The last centre to do that was in August 2019

2) The registry has now been set up in York under the Cell Bank Governance structures

3) We have collected data and samples on 20 children. This is about 70 % of where we had hope to be. We had aimed for 30 cases at this moment in time

4) Despite the COVID-19 crisis, biobanking and data registry has continued.

Update on Quality of Life Proposal

1) Discussions with collaborator in Switzerland had advanced to generating an English paediatric trial protocol to measure quality of life

2) Patient information sheets had been generated

3) Plans had been set up to submit proposal to REC in Feb 2020 with aim to set up pilot study

4) Since COVID-19 crisis, R+D has closed a significant number of studies. Research nurses have been redeployed. Following discussions internally, it was agreed that a quality of life study would not be a priority at this moment in time. It is unclear as and when this will change.

5) The quality of life study therefore is unlikely to open. The original proposal had not included costs for this part of the study.

May 2020, Dr Sujith Samarasinghe, Great Ormond Street Hospital, London