Adolescents and young adults with Rare Diseases face significant challenges when transferring from paediatric to adult healthcare services, leading to diverse negative outcomes such as disease progression, increased hospitalization rates, and loss to follow-up. Current transition programs have proven efficient in improving outcomes in various populations, but the complexity of Rare Diseases poses unique clinical and non-clinical challenges that require a different, holistic, and system-based approach. This complexity underscores the emerging need for Integrated Transitional Healthcare services.

To move beyond the development of isolated programs, recent research calls for Service Design methods that embrace multi-actor dynamics and interdependencies in complex service systems. These methods offer a promising way to address the clinical and non-clinical barriers faced by young people with Rare Diseases and other stakeholders during the transition to adult care services. The aim of this project is to generate robust scientific evidence demonstrating that an Integrated Transitional Healthcare service model – specifically designed to meet the needs of all stakeholders in Rare Disease care and developed through a Service Design methodology – is effective, feasible, and cost-effective. The goal is to improve equal access to age-appropriate, specialized healthcare and enhance clinical outcomes compared to the current standard of care. 

The DITHARD project focuses on the following objectives:
1. to adapt existing human-centred Service Design methodologies for adolescents and young-adults;
2. to identify key components of effective transition programs and Service Design; 
3. to deepen our understanding of (non-)clinical challenges and social determinants;
4. to co-design a new Integrated Transitional Healthcare service model;
5. to evaluate the effectiveness of this Integrated Transitional Healthcare service model; and
6. to conduct a comprehensive process evaluation.