The National Institute for Health and Care Research is pleased to share an opportunity to be involved in the co-design of a commercial research study (that is a study funded by a pharmaceutical, biotechnology or medical device company) into thalassaemia, by participating in an online document review. We want to hear your experiences of living with this condition to ensure that this and future research is as accessible as possible for everyone, by designing it for patients, with patients.


The NIHR is looking for up 4-6 adult individuals (age over 18), living in the UK, to participate in this opportunity.

We are looking for people who have lived experience of thalassaemia or other red blood cell disorders (such as sickle cell anaemia), as a patient or a carer, who would be willing to share their experiences and management of this condition.

You will need to be comfortable with reviewing the documentation and sending back comments online.


This is an online document review to comment upon the design of an observational research study and how the information introducing the research is presented to patients. The NIHR want to ensure that the documents are informative, accessible, engaging and fit for purpose, and that the language used is appropriate for potential participants and caregivers. Participants will have 10 days to review the documents and return their feedback.


Documents will be sent via email. The NIHR PECD service will endeavour to make these documents as accessible as possible, depending on participant requirements.

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