Work Package 7 - ConnectEpeople (closed 31 December 2019 by General Assembly vote)
To connect researchers with families who live with congenital anomalies (CA) across Europe to involve them in setting research priorities and ensuring that research results are disseminated in a meaningful way.
To attempt to establish a sustainable e-forum, “ConnectEpeople”, for providing regional, national and international support to families with congenital anomalies through maintaining the links between the EUROCAT congenital anomaly registries and the families.
Description of Work and Role of Partners
This WP was led by Professor Marlene Sinclair (UU). Redburn Solutions Ltd provided the IT support and expertise required to establish the e-forum “ConnectEpeople”. ConnectEpeople was about registries contacting parents and carers of children with congenital anomalies in their regions and creating a network linking them with local, national and international registries and evidence-based information resources.
This WP scoped the current networks available within the EU registries and their links to parent groups and evidence-based resources. It then surveyed parent groups to identify their views on obtaining information on their child's condition, with one of four congenital anomalies: Down syndrome (a visible anomaly with many health issues including intellectual disability), Severe congenital heart defects (non-visible anomalies with very high mortality requiring multiple surgeries), Spina bifida (a visible anomaly which can be physically disabling and intellectually disabling with potential to require surgery) and Cleft lip with cleft palate (a visible anomaly with associated speech problems requiring multiple surgeries).
The specific tasks were:
1. Parent support groups will be identified across Europe concerned with each of the four congenital anomalies chosen and contacted face to face or by twitter, Facebook, email, skype, webinar, live chat or blogging to identify all of the current communication networks they use to obtain information about their children’s conditions. Selected parents from the parent group network will be linked to create a virtual stakeholder forum “ConnectEpeople”, where a summary of this network scoping exercise will be presented.
2. The information being collected plus what specific hypotheses are planned to be investigated in EUROlinkCAT will be communicated with the selected parents. This information will be produced in English. The parents' views will be sought by a survey, using social media to advertise.