Welcome!

We are now launching the second survey of the Sickle Cell and Genomics Priority Setting Partnership (PSP).

In the first survey, we asked people living with sickle cell, their families, carers, and healthcare professionals to tell us the most important questions they would like to see answered by future research. From those responses, we have carefully reviewed, combined, and synthesised the submissions into a set of questions for research.

This second survey asks you to read through a list of questions and choose up to 10 that matter most to you: as someone with sickle cell or sickle cell trait, a family member or carer, or a healthcare professional.

Your input will help us identify which research areas matter most to the sickle cell community, ensuring that the voices of people directly affected are at the heart of future research decisions.

The results of this survey will help to identify around 26 of the most popular questions to be taken into a workshop with people with sickle cell, sickle cell trait, caregivers and healthcare professionals to discuss and agree on the top 10 priorities for sickle cell and genomics research.

What is the Priority Setting Partnership (PSP)?

This survey is part of a Priority Setting Partnership (PSP) led by the Sickle Cell Society, Genomics England (through the the *Diverse Data Initiative) and the James Lind Alliance. Completing the survey will take around 10 minutes, and you can enter a prize draw to win a £150 Amazon voucher.

What is Genomics?

Genomics is the study of DNA and its role in health and disease. In sickle cell research, genomics can help us understand the genetic basis of the disease and potentially lead to new treatments or cures.

Even if you are not familiar with genomics, your input is still extremely valuable in helping us focus research where it will make the most difference. The short video below tells you more about the Sickle Cell and Genomics PSP.

These responses will not require you to use any identifiable information meaning that your responses will be anonymous.

Survey Process

First, you’ll be asked to tick all of the questions that resonate with you. Then you’ll have the opportunity to choose up to 10 questions that matter most to you. The survey begins with a short section about your background and then moves into the tick-box and final selection.

*If you would like to find out more about the Diverse Data Initiative please visit: https://www.genomicsengland.co.uk/initiatives/diverse-data/sickle-cell
 

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