The project explores how people affected by genetic or rare conditions, such as sickle cell disorders, define ‘value’ when thinking about new medicines that could treat or even stop all the effects of sickle cell disorders. In other words, how they weigh up the positives and the risks involved in taking any new medicine.

The researchers want people to give their opinions on issues such as:
– Will the medicine work for me?
– What will its side effects be?
– How will medicine’s benefits allow me to live the life I want, when balanced against the risks of side effects and burden of treatment?
– What level of risk am I ready to take with this new possible medicine?

These questions are critical when thinking of the benefits and risks of a new medicine, because the views of patients and carers can differ greatly from those who decide on prescribing a new medicine. This is becoming a hot topic in the development of new medicines for conditions such as sickle cell disorders.

The web-survey is now live and you are invited to take part. Click on the link below to start.
But note that it will take about 20 minutes to complete. And you can’t stop and start during it because of the way it is designed.

The survey can be completed by anyone affected by sickle cell disorders – patient or caregiver – living in the UK.

Click here to take the survey

It’s all anonymous. But if you have any concerns or questions, please do ask me. I have tested it.

Thank you for your support!