Introduction
Thank you for taking part in this important survey. We want to understand the experiences of people affected by rare diseases, including patients, carers, healthcare professionals, and others who work in the rare disease community. Your answers will help shape improvements in care and support. The survey should take around 20–30 minutes. All responses are anonymous. You'll be asked questions based on your role.
Before beginning the survey, please ensure you read the following information carefully:
Participant Information Sheet
Project Title: RareCare National Survey
Principal Investigator: Dr. Elizaveta Osipenko (Consilium Scientific)
You are invited to take part in a national survey about experiences with rare diseases in England. This research is part of the RareCare project, funded by the National Institute for Health and Care Research (NIHR).
You are invited to take part in a national survey about experiences with rare diseases in England. This research is part of the RareCare project, funded by the National Institute for Health and Care Research (NIHR).
1. What is the purpose of this research?
This survey aims to gather a wide range of views from people living with rare diseases and their carers. We want to understand your experiences with getting a diagnosis, the awareness of healthcare professionals, and your access to specialist care. For professionals, we are interested in your views on the challenges, successes, and priorities for measuring improvement in line with the UK Rare Disease Framework.
Your answers will help us provide evidence on what is working well and what needs to be improved. A key part of this project involves securely sharing the fully anonymised information you provide with our partners at Coventry University. They are conducting a separate, complementary analysis to help build a complete national picture of rare disease care. Your contribution will help form the basis of both parts of this evaluation.
2. Why have I been invited?
You have been invited because you have personal experience with rare diseases. This may be personal experience, either as a patient or as a carer, partner, or family member. Alternatively, you may have been invited because of your professional role and expertise as a healthcare professional, NHS manager, researcher, or policy expert.
To take part as someone with personal experience, you must be 18 or over and your experience of rare disease must be based in England.
3. Do I have to take part?
No, taking part is completely voluntary. You can also skip any questions you don't wish to answer.
4. What will happen if I take part?
You will be asked to complete an anonymous online survey that will take approximately 20-30 minutes.
5. What are the risks and benefits of taking part?
We do not expect the survey to cause any distress, but we understand that thinking about these topics can be emotional. To ensure support is available, a list of relevant organisations will be provided on the final page of the survey. You will not receive any direct personal benefit from taking part in this study. However, by taking part, you will be helping to build a national picture of rare disease experiences that can be used to improve care for others.
6. Will my answers be confidential?
Your confidentiality will be protected because the survey is anonymous. We will not ask for your name or any other information that could directly identify you. The survey platform has been set up so that your computer's IP address is not recorded.
7. How will my data be used and stored?
Consilium Scientific is the Data Controller for the data collected in this part of the study and will store your data on secure, encrypted servers.
As we explained earlier, a key purpose of this project is to build a comprehensive picture of rare disease care. To achieve this, the fully anonymised data from your participation will be securely shared with our research partners at Coventry University for further analysis. A formal Data Transfer Agreement is in place to govern this process, ensuring your data remains anonymous and is used only for the agreed research purposes.
Both Consilium Scientific and Coventry University will store the final anonymised dataset for 10 years after the study has finished, at which point it will be permanently deleted.
8. What will happen if I want to withdraw?
Participation is voluntary and you do not have to complete the survey. You can stop at any time before you press the final 'submit' button by simply closing your browser window. However, once you have submitted your answers, they cannot be withdrawn. As the survey is anonymous, we will have no way of identifying your individual response from the dataset.
9. What if there is a problem? (Complaints)
If you have any concerns about any aspect of this study, please speak with the Principal Investigator, Dr. Elizaveta Osipenko. If you remain unhappy and wish to make a formal complaint, you can contact the independent project co-lead, Josie Godfrey, at josie@realiseadvocacy.com.
10. Who has reviewed this study?
This project has been independently reviewed and given a favourable opinion by a University of Portsmouth Research Ethics Committee (UK), but the University has had no further involvement in this study.
Contact for Further Information:
Dr. Elizaveta Osipenko, Consilium Scientific.
Email: ll@consilium-scientific.org
Phone: (+44) 7402 288706
Thank you for considering taking part in this research.