Identifying Research Priorities in Sickle Cell and Genomics |
1. Welcome!
Thank you for participating in this survey, which aims to gather insights from people with lived experience of sickle cell, family members, carriers, caregivers, and healthcare professionals. Our goal is to identify the most important research areas for sickle cell and how genomics can contribute to improving patient care and outcomes.
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. Its goal is to gather input from patients, carers, and healthcare professionals to identify the most important questions for future sickle cell and genomics research.
Your responses will help shape the research priorities that matter most to the sickle cell community. 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.
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.
We will use your responses to create summary questions for research. These will be carried into a shortlisting survey where people with a connection to sickle cell will have the opportunity to choose the questions that matter most to them. Around 20-26 of the most popular questions will be taken into a workshop with people with sickle cell, carriers, caregivers and healthcare professionals to discuss and agree on the top 10 priorities for sickle cell and genomic research.
These responses will not require you to use any identifiable information meaning that your responses will be anonymous.
Survey Process
We’ve designed this survey to gather your thoughts in your own words, which is why it focuses on open-ended questions rather than a simple tick-box format. We know that expressing ideas freely can sometimes feel challenging, so we’ve structured the survey to guide you through it. It begins with a brief section about your background, followed by open-ended questions where you’ll have space to share whatever comes to mind. After some of these, you’ll encounter some prompts in a multiple-choice style, allowing you to select options that resonate with you.
We’ve designed this survey to gather your thoughts in your own words, which is why it focuses on open-ended questions rather than a simple tick-box format. We know that expressing ideas freely can sometimes feel challenging, so we’ve structured the survey to guide you through it. It begins with a brief section about your background, followed by open-ended questions where you’ll have space to share whatever comes to mind. After some of these, you’ll encounter some prompts in a multiple-choice style, allowing you to select options that resonate with you.
*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