Transition From Children's to Adults' Healthcare for Youth With (Genetic) Intellectual Disabilities: An ERN-ITHACA Guideline.

This is a guideline, not a trial. It reports no patient outcomes and does not show that the recommended transition steps improve health, participation or independence. The authors say all available literature was very low grade and mostly exploratory or descriptive, and no GRADE analysis was done. Research evaluating transition interventions for young people with intellectual disabilities is scarce, and some interventions may not be suitable or easy to implement. The survey had 157 caregivers but limited response from young people, so young people's views may be underrepresented. The target population is broad, from rare genetic conditions to profound intellectual and multiple disabilities, and the authors note large variation in European health systems and resources. The literature search ended in July 2022, and the guideline will be revisited after 5 years.

The guideline was funded by the European Reference Network on Rare Congenital Malformations and Rare Intellectual Disability and the EU4Health programme of the European Union. Some authors received research support from grants unrelated to this publication, and some report consultancy in rare disease areas. The remaining authors declared no conflicts.

Do not read the named worker and early planning recommendations as proven ways to improve outcomes. The guideline is based on expert consensus and a literature base the authors describe as very low grade, and the authors say research evaluating transition interventions is scarce.