Research Center for Neurological Learning and Developmental Disorders

Since 2010, we have been collaborating with Erasmus MC/Sophia Children's Hospital/ENCORE on the VOLG study, which stands for ‘Early Recognition of Learning and Behavioral Problems’. The goal of our part of the research is to examine the course of intellectual and neurocognitive development in children and adolescents with NF-1 (Neurofibromatosis type 1) and to identify risk factors associated with this development. This is a prospective and longitudinal cohort study. So far, approximately four hundred children with NF1 have been included in the analyses. These children underwent neuropsychological assessments between 2010 and 2020. Patients are referred to either Erasmus MC or the Center for Neurological Learning and Developmental Disorders (CNL), with referrals following the care standards according to four key ages: around three, six, eleven, and fifteen years. The children are given a standardized neuropsychological test battery as part of a structured follow-up program. This neuropsychological assessment includes an intelligence test.

For more information, visit: Erasmus MC - Neurofibromatosis Type 1 (NF1)

The definition of transition is as follows: "A deliberate, planned process that addresses the medical, psychosocial, educational, and developmental needs of adolescents and young adults with chronic diseases and physical disabilities, when transitioning from pediatric to adult care, ensuring comprehensive, well-coordinated, and continuous care at the appropriate time in the developmental phase."

Young people with neurological conditions are often socially and relationally limited due to the effects of their condition. Individualization is often complicated, and independence is not always achievable in all areas. This can lead to feelings of loneliness, anxiety, or mood disorders if the transition to adulthood is not adequately supported. Kempenhaeghe already has considerable experience with multidisciplinary transition care in epilepsy care.

Investing in transition care is essential, as neglecting it in the long term can lead to higher social and economic costs due to young people with neurological conditions dropping out of services. This can exacerbate existing psychosocial issues. The increased risks from the genetic condition can lead to higher rates of disease-related complications (van Lierde et al., 2013).

A poll at the general members' meeting of one of our patient associations (NFVN) showed that parents and young people need a multidisciplinary approach for transition care. They want their strengths and weaknesses in thinking/learning to be framed, alongside discussions about education, career choices, work, housing, and finances. They prefer having an expert who can provide advice and consult with other healthcare providers involved in the care of the young person. To address this, a care pathway has recently been developed, involving various disciplines such as a (pediatric) neurologist, clinical psychologist/neuropsychologist, basic psychologist and psychological assistant, nurse specialist, child and adolescent psychiatrist, educational expert, and social worker. In the second quarter of 2024, a pilot transition care program will be launched within the Center for Neurological Learning and Developmental Disorders.