ABOUT COIN STUDY
Welcome to the CoIN Study. We are investigating the impact of the Covid-19 pandemic on mental health and wellbeing in families of children with rare genetic and neurodevelopmental disorders.
The CoIN Study will track changes in wellbeing during and after the pandemic in order to understand the specific challenges facing families of children with rare disorders and how these relate to mental health and wellbeing. Your responses will be rapidly fed back to charities and support organisations, and used to identify and provide better ways of supporting you both now and in the future.
We are inviting those who have a child aged 0-16 years old with a rare genetic or neurodevelopmental disorder to participate in the study. You must be at least 16 years old to take part, and able to understand and communicate in English.
The survey will take up to 40 minutes to complete the first time you do it and about 15 minutes to complete thereafter. We will ask you to complete the survey once per month until children are back in their usual education
CORE TEAM MEMBERS
Principal investigator: Dr. Charlotte Tye (King's College London).
Research Assistant: Abigail Runicles (King's College London)
Dr Michael Absoud (King's College London)
Dr. Kate Baker (Univerisity of Cambridge)
Prof. Patrick Bolton (King's College London)
Dr. Hayley Crawford (University of Warwick)
Prof. Emily Farran (University of Surrey)
Dr. Megan Freeth (University of Sheffield)
Prof. Emily Jones (Birkbeck, University of London)
Dr. Jo Moss (University of Surrey)
Dr. Sinead Rhodes (The University of Edinburgh)
Prof. Deborah Riby (University of Durham)
Dr. Caroline Richards (University of Birmingham)
Prof. Gaia Scerif (University of Oxford)
Prof.Emily Simonoff (King's College London)
Prof. David Skuse (University College London)
Dr. Jo Tarver (Aston University)
Dr. Jo Van Herwegen (University College London)
Dr. Jane Waite (Aston University)
Dr. Jeanne Wolstencroft (University College London)
WHAT WILL YOU DO WITH MY DATA AND WILL IT BE SAFE?
Keeping your information secure is our highest priority. There are a number of regulations and policies that COiN complies with to ensure data is protected.
The EU General Data Protection Regulation (GDPR) was put in place to ensure the protection of all EU citizens’ data privacy. It also gives people the rights to access any information held about them.
WHAT IS THE PURPOSE OF THE PROJECT?
We would like to understand the specific challenges facing families of children with rare disorders during and after the Covid-19 pandemic, and how these relate to mental health and wellbeing in parents and children over time. We hope this will help us to understand the needs of these families at this time and work out the best way to support families now and in the future.
HOW LONG WILL IT TAKE?
The survey will take up to 40 minutes to complete the first time you do it and about 15 minutes to complete thereafter.
We will ask you to complete the survey once per month until children are back in their usual education.
For coping tips and resources for families, please see:
No, you do not. You can leave the questionnaire and come back to it. However, you do need to return to the questionnaire using the same browser (e.g. chrome), and it also needs to be done using the same computer or device as before. The survey will refresh after 1 month.
DO I HAVE TO DO IT ALL IN ONE GO?
WHY SHOULD I TAKE PART?
What you say will help us to understand how pandemics affect the mental health and wellbeing of families of children with rare disorders and to improve support now and in the future.
WHY HAVE I BEEN INVITED TO TAKE PART?
You are invited to take part because you have a child aged 0-16 years old with a rare genetic or neurodevelopmental disorder. You must be at least 16 years old to take part, and able to understand and communicate in English.
WHAT IF I DON’T FEEL COMFORTABLE ANSWERING SOME OR ALL OF THE QUESTIONS?
Simply leave it blank and move on to the next one. You may complete the questionnaire in your own time. You may end your participation at any time, for any reason, and we will not ask you why. You can opt out of recontact at any point. You can also skip a questionnaire and continue to participate in later surveys. These decisions are entirely yours and we respect your wishes.
WHAT WILL HAPPEN TO THE RESULTS OF THE STUDY?
We will provide information about the results of this study on the study website and rapidly feed back results to rare disorder charities who will share the information. We also expect to publish in scientific journals so that our findings will be peer-reviewed. It is likely our research will be used to inform government policies.