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CoIN Findings

The CoIN Study aims to track the wellbeing of families of children with rare neurogenetic syndromes throughout the Covid-19 crisis. Recruited families are invited to complete an initial baseline survey and monthly follow-up survey, which ask about family life and relationships, access to healthcare and education, overall health and wellbeing, their child’s behaviour and how they are coping during the Covid-19 pandemic.  


The findings from this study will identify and characterise the specific challenges faced by families of children with rare neurogenetic disorders during the pandemic and their immediate and long-term impact on family wellbeing and mental health. The responses provided by families will be shared with charities and support organisations to identify and provide better ways of supporting families now and in the future 

Focus of Reports

The aim of the reports is to provide an overview of the baseline data from 159 parents/carers. These participants completed (‘Completion’ of the survey is based on participants have completed items up to and information about their child with a rare disorder) the baseline survey between 15/05/2020 and 31/10/2020. Data presented is calculated as a percentage of the total number of complete responses for each individual survey item. A variety of means were used to recruit the CoIN study sample, including social media, the study website, specialist schools and distribution through co-investigator and collaborator networks and charities (e.g., Genetic Alliance UK).  Due to the self-selecting nature of recruitment, the sample in the reports is not representative. Further information about the respondent’s characteristics can be found below.  

Sample Characteristics 
  • Parents/carers were aged 21-67 years old (mean age: 40.3 years) 

  • Most parents/carers were female (91.2%) 

  • The majority of parents/carers were employed, including self-employed (61.7%) 

  • The most common average household income was £30,000--59,999 a year (32.1%) 

  • Children were aged 0-15 years old (mean age: 8.2 years) 

  • 49.7% of children were female and 50.3% were male 

  • 37.6% of children attended a special education preschool/school 

  • Over 100 different rare disorders 

  • 73.0% of children live with a general learning disability, including intellectual disability and developmental delay, and 25.8% are diagnosed with autism spectrum disorder 

Report 01 - Daily Life
Report 02 - Coping, Support & Resources
Report 03 - Healthcare & Interventions
Report 04 - Child
Report 05 - Parental Mental Health & Wellbeing

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