Project: Impact of a neuro-cardiac rehabilitation program on the quality of life of children, adolescents and young adults with rare congenital heart disease: the multicentre randomized controlled QUALI-NEUROREHAB trial

Acronym	NEUROREHAB (Reference Number: EJPRD21-049)
Project Topic	Remarkable progress in paediatric cardiology and surgery have led to the substantial increase of congenital heart disease (CHD) survivors. Long-term outcomes in rare and complex CHD have become a critical priority as three major sources of morbidity have been identified in this population: neurodevelopmental sequelae, mental health issues and reduced exercise capacity. These challenges adversely affect their quality of life and constitute a major public health issue. We seek to evaluate the efficacy of the first integrative and holistic program in Neuro-Cardiac Health associating physical and psychological rehabilitation for children with rare CHD compared to the standard of care. Children randomly assigned to the intervention will undergo a 12-week neuro-cardiac intervention including home-based adaptive physical exercise, telehealth parent and child psycho-education and child computerized cognitive training, as well in-person individual sessions of intervention reinforcement. Parents will be actively involved and will receive personalized feedback and educational resources. Children assigned to the control group will receive the standard of care in congenital cardiology. Post-intervention effects will be measured after 12-months on several outcomes including health-related quality of life (HRQoL), trained and untrained cognitive skills, mental health outcomes and cardiovascular/physical variables.
Network	EJP RD
Call	3rd EJP RD Joint Transnational Call for Rare Diseases Research Project (JTC 2021)

Project partner

Number	Name	Role	Country
1	University Hospital of Bordeaux	Coordinator	France
2	Saint-Luc University Hospital	Partner	Belgium
3	The German heart center	Partner	Germany
4	University of Montpellier	Partner	France
5	Petit Cœur de Beurre	Observer	France