The transition process from paediatric to adult care in chronic diseases, such as inborn errors of metabolism, has been a topic of great interest in recent years. Thanks to earlier diagnosis and advances in treatment, the prognosis of these diseases has improved, which means that an increasing number of patients have currently reached adult age and need to be treated by non-paediatric professionals. Adolesence is the period in which the main gaps the process of transitioning from paediatric to adult health services lie; there is a big risk of deterioration in the health of young adults with chronic conditions as a result of the lack of a coordinated and formalised transition process.

Transitional care has been defined as ‘the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centred to adult-oriented health care systems’. As for now, it seems that little has been done in centres and hospitals (or at national level) to address this issue. On top of this, there is a lack of literature and research on the topic. MetabERN has highlighted the need to take urgent action to address this issue and this is why, in the context of Workpackage 4 (WP4) (Guidelines, Care Pathways and Standardisation for Medical Care and Transition), MetabERN has established a Transition Project Working Group led by referral experts in the field.

One of the first steps in this process is to investigate how the transition process is facilitated in European Metabolic Centres. To achieve this, a survey will be sent to members of MetabERN to collect information and make an overview of gaps and needs. This overview will firstly be used to raise policymakers' and politicians' awareness of the issue at national and European level. We will then use this information to promote professional training and educational programs with the collaboration of other Workpackages involved in MetabERN and SSIEM (Society for the Study of Inborn Errors of Metabolism) working groups. Thirdly, we will raise awareness on this important topic by organising scientific meetings with different professionals involved in paediatric and adult care.

The final aim of these steps is to collaborate and share expertise and good practices in order to develop possible guidelines and standard operating procedures. This way, all specialists involved in the care of patients with IEM (Inborn Errors of Metabolism) (and potentially in other fields) will have access to guidance and help in the management of this delicate process, ensuring that a more successful transition for all patients can be foreseen.