SURVEY INFORMATION SHEET
What are the most important unanswered questions about Polycystic Ovary Syndrome?
Identifying the top 10 research priorities for people living with Polycystic Ovary Syndrome in the UK and the practitioners providing their healthcare
You are being invited to take part in a research survey. Before you decide whether or not to take part, it is important for you to understand why the research survey is being undertaken and what it will involve. Please take time to read the following information carefully and discuss it with others if you wish. Contact details are given at the end of this information section if you have any questions you want to ask.
Thank you for reading this.
What is the purpose of this research survey?
This survey is part of a James Lind Alliance Priority Setting Partnership in Polycystic Ovary Syndrome (PCOS). This partnership is a collaboration between people living with PCOS and people who support them and/or provide healthcare for PCOS in the UK (e.g. health charities, doctors, nurses, dietitians and psychologists). The aim of the partnership is to identify the top 10 most important questions that these groups want research to answer. To do that, we need as many people as possible who are living with PCOS and people who provide healthcare and support for PCOS to tell us their ideas.
This first survey is to find out what you think are the most important gaps in knowledge about PCOS, and what matters most to you that you don’t think we know the answer to. From all the responses we receive, we will turn the ideas and suggestions into summary questions that research can answer. These will be included in a second survey later in the year to identify the top 10 priorities.
Why have I been invited to take part?
You have been invited because you are living with PCOS, you support someone living with PCOS (e.g. parent or partner) and/or you provide healthcare for people living with PCOS in the UK.
Do I have to take part?
Taking part in this survey is entirely your choice; your answers will be anonymous, so we will not be able to identify you. As responses are anonymous, we won’t be able to withdraw responses once you have submitted the survey, but you can stop completing it at any point.
What will taking part involve?
The survey will likely take about 10-15 minutes to complete, depending on how many responses you want to include. You can write your responses in any way, and please provide as many questions, thoughts or comments as you are comfortable with. Please do not include details that will identify you or others (names, for example), and we cannot respond to individual questions about your care or the care of others.
Will I be paid for taking part?
There won’t be any payment for taking part – we are grateful for you freely giving your time to complete this survey.
What are the possible benefits of taking part?
There will be no direct advantages or benefits to you from taking part, but your contribution will help us understand what the main unanswered questions are for people living with PCOS and from that we can identify the priorities for PCOS research in the UK.
What are the possible risks of taking part?
We do not think there are any risks to taking part. However, we know that writing about living with PCOS and the unanswered questions you may have, might cause distress, so please be kind to yourself, maybe talk to someone close to you or contact one of the anonymous online groups such as the Verity Facebook Group (private and confidential), HealthUnlocked (anonymous forum) or find your nearest local Support Group where you can connect with, and ask questions to, other PCOS patients.
Will my taking part in this research project be kept confidential?
All information collected through this survey will be anonymous. All the questions/ideas you submit will be made available on the JLA website but will not be connected to individuals.. The summary questions created from all the survey responses, which may include excerpts from anonymised individual responses, will be widely shared and included in publications.
What will happen to my Personal Data?
There will be no personal identifiable data included in this survey. The survey data will be collected via an online survey and then stored on a secure Cardiff University network
What happens to the data at the end of the research project?
The survey data will be stored on a secure Cardiff University network in accordance with Cardiff University research project conduct protocols. The responses to the survey will be quoted on the James Lind Alliance website to show what ideas people have sent to us, but these will be anonymous.
What will happen to the results of the research project?
From all the responses we receive to this survey, we will turn the ideas and suggestions into summary questions that research can answer, and these will be included in a second survey later in the year, asking people to say which of the summary questions they think are the most important. The final Top 10 priorities will be decided in a workshop at the end of the year and we hope that they will be used by individuals and organisations to decide which research projects should receive funding in future.
The results of the project will be freely available on the James Lind Alliance and Verity Websites. It is our intention to publish the results of this research project in academic journals and present findings at conferences.
What if there is a problem?
If you wish to complain or have grounds for concern about any aspect of how you have been approached or treated during the course of this research, please contact Professor Aled Rees ([email protected] ). If your complaint is not managed to your satisfaction, please contact the Chair of the School Research Ethics Committee ([email protected]). If you are harmed by participating in this research project, there are no special compensation arrangements. If you are harmed due to someone's negligence, you may have grounds for legal action, but you may have to pay for it.
Who is organising and funding this research project?
The research is organised by Professor Aled Rees, School of Medicine in Cardiff University. The research is funded by the Waterloo Foundation.
Who has reviewed this research project?
This research project has been reviewed and given a favourable opinion by the School of Medicine Research Ethics Committee, Cardiff University.
Further information and contact details
Should you have any questions relating to this research project, please contact:
Dr Sue Channon, Senior Research Fellow, Centre for Trials Research Cardiff University [email protected] 02920 875047
Identifying the top 10 research priorities for people living with Polycystic Ovary Syndrome in the UK and the practitioners providing their healthcare
You are being invited to take part in a research survey. Before you decide whether or not to take part, it is important for you to understand why the research survey is being undertaken and what it will involve. Please take time to read the following information carefully and discuss it with others if you wish. Contact details are given at the end of this information section if you have any questions you want to ask.
Thank you for reading this.
What is the purpose of this research survey?
This survey is part of a James Lind Alliance Priority Setting Partnership in Polycystic Ovary Syndrome (PCOS). This partnership is a collaboration between people living with PCOS and people who support them and/or provide healthcare for PCOS in the UK (e.g. health charities, doctors, nurses, dietitians and psychologists). The aim of the partnership is to identify the top 10 most important questions that these groups want research to answer. To do that, we need as many people as possible who are living with PCOS and people who provide healthcare and support for PCOS to tell us their ideas.
This first survey is to find out what you think are the most important gaps in knowledge about PCOS, and what matters most to you that you don’t think we know the answer to. From all the responses we receive, we will turn the ideas and suggestions into summary questions that research can answer. These will be included in a second survey later in the year to identify the top 10 priorities.
Why have I been invited to take part?
You have been invited because you are living with PCOS, you support someone living with PCOS (e.g. parent or partner) and/or you provide healthcare for people living with PCOS in the UK.
Do I have to take part?
Taking part in this survey is entirely your choice; your answers will be anonymous, so we will not be able to identify you. As responses are anonymous, we won’t be able to withdraw responses once you have submitted the survey, but you can stop completing it at any point.
What will taking part involve?
The survey will likely take about 10-15 minutes to complete, depending on how many responses you want to include. You can write your responses in any way, and please provide as many questions, thoughts or comments as you are comfortable with. Please do not include details that will identify you or others (names, for example), and we cannot respond to individual questions about your care or the care of others.
Will I be paid for taking part?
There won’t be any payment for taking part – we are grateful for you freely giving your time to complete this survey.
What are the possible benefits of taking part?
There will be no direct advantages or benefits to you from taking part, but your contribution will help us understand what the main unanswered questions are for people living with PCOS and from that we can identify the priorities for PCOS research in the UK.
What are the possible risks of taking part?
We do not think there are any risks to taking part. However, we know that writing about living with PCOS and the unanswered questions you may have, might cause distress, so please be kind to yourself, maybe talk to someone close to you or contact one of the anonymous online groups such as the Verity Facebook Group (private and confidential), HealthUnlocked (anonymous forum) or find your nearest local Support Group where you can connect with, and ask questions to, other PCOS patients.
Will my taking part in this research project be kept confidential?
All information collected through this survey will be anonymous. All the questions/ideas you submit will be made available on the JLA website but will not be connected to individuals.. The summary questions created from all the survey responses, which may include excerpts from anonymised individual responses, will be widely shared and included in publications.
What will happen to my Personal Data?
There will be no personal identifiable data included in this survey. The survey data will be collected via an online survey and then stored on a secure Cardiff University network
What happens to the data at the end of the research project?
The survey data will be stored on a secure Cardiff University network in accordance with Cardiff University research project conduct protocols. The responses to the survey will be quoted on the James Lind Alliance website to show what ideas people have sent to us, but these will be anonymous.
What will happen to the results of the research project?
From all the responses we receive to this survey, we will turn the ideas and suggestions into summary questions that research can answer, and these will be included in a second survey later in the year, asking people to say which of the summary questions they think are the most important. The final Top 10 priorities will be decided in a workshop at the end of the year and we hope that they will be used by individuals and organisations to decide which research projects should receive funding in future.
The results of the project will be freely available on the James Lind Alliance and Verity Websites. It is our intention to publish the results of this research project in academic journals and present findings at conferences.
What if there is a problem?
If you wish to complain or have grounds for concern about any aspect of how you have been approached or treated during the course of this research, please contact Professor Aled Rees ([email protected] ). If your complaint is not managed to your satisfaction, please contact the Chair of the School Research Ethics Committee ([email protected]). If you are harmed by participating in this research project, there are no special compensation arrangements. If you are harmed due to someone's negligence, you may have grounds for legal action, but you may have to pay for it.
Who is organising and funding this research project?
The research is organised by Professor Aled Rees, School of Medicine in Cardiff University. The research is funded by the Waterloo Foundation.
Who has reviewed this research project?
This research project has been reviewed and given a favourable opinion by the School of Medicine Research Ethics Committee, Cardiff University.
Further information and contact details
Should you have any questions relating to this research project, please contact:
Dr Sue Channon, Senior Research Fellow, Centre for Trials Research Cardiff University [email protected] 02920 875047