Project: Holistic mixed approaches to capture the real life of children with Rare Eye Diseases

Acronym SeeMyLife (Reference Number: EJPRD21-094)
Project Topic In Europe, Rare Eye Diseases (RED) are the leading cause of severe visual impairment/blindness (SVI/B) in children. This sensory disability with its accompanying psychological distress hugely impacts their lives and their families. Understanding this impact is key in care, shared decision making, developing therapies, and improving social integration. However, current tools to evaluate vision related quality of life (VR-QoL) disregard age and cultural differences, while we lack knowledge on what aspects of this impact are important at the individual child’s level. Instruments capable of yielding high-quality data, with broad applicability and regulatory compliance, remain to be developed. SeeMyLife convenes a multidisciplinary team from 6 EU countries to generate data on the experience of these children. We will combine quantitative (QUAN) and qualitative (QUAL) data in a mixed methods research framework. QUAN data will be generated using standardized, validated VR-QoL questionnaires. QUAL data will be generated from a socio-anthropologic study including semi-directive interviews to address how their disability affects lives. The conclusions of the QUAN study, comparable across several countries, will be reinforced by the richness of the individual data collected during the QUAL study. SeeMyLife will provide tools for RED children/teenagers’ self-report which will be used in clinical care and research as a new European standard, and the long-awaited knowledge about the patient’s position within his/her own life course and within his/her family and healthcare actors.
Network EJP RD
Call 3rd EJP RD Joint Transnational Call for Rare Diseases Research Project (JTC 2021)

Project partner

Number Name Role Country
1 Hôpitaux Universitaires de Strasbourg (HUS) Coordinator France
2 University of Strasbourg (UNISTRA) Partner France
3 University Hospital Bonn Partner Germany
4 Fondazione IRCCS Istituto Neurologico Carlo Besta Partner Italy
5 Ghent University Hospital Partner Belgium
6 Lithuanian University of Health Sciences Partner Lithuania
7 Medical University of Lublin Partner Poland
8 Retina international Observer Switzerland
9 Retina AMD Poland Observer Poland
10 ProRetina Observer Germany
11 ANPEA Observer France
12 Association Vision'ère Observer France
13 Fiori Blu Observer Italy
14 Association AniridijaLT Observer Lithuania
15 Association belge francophone de la rétinopathie d'origine génétique RetinaPigmentosa Observer Belgium
16 University of Ferrara Observer Italy
17 Université du Québec à Trois Rivière Observer Canada
18 Universita degli Studi del Molise Observer Italy
19 Institut national supérieur de formation et de recherche pour l’éducation des jeunes handicapés et els enseignements adaptés (INSHEA) Observer France
20 Université de Namur Observer Belgium
21 Robert Hollman Foundation Observer Italy
22 Institut pour Déficients Sensoriels et Dysphasiques de la Fondation Le Phare Observer France
23 Educational Center for Disabled Children and Adolescents Observer Poland
24 Lithuanian Center For Blind and Visually Impaired Observer Lithuania
25 VZW De Kade ASBL Observer Belgium
26 Center for Retinitis Pigmentosa of the Veneto Region - Camposampiero Hospital Observer Italy