Rachel van Leeuwaarde of UMC Utrecht receives a Kika grant of almost €200.000 for research on children with MEN-syndrome.
People with MEN-syndrome (Multiple Endocrine Neoplasia) have a chance of developing endocrine tumours at a young age. This rare syndrome is hereditary. If one of the parents has it, each child has a 50% chance of developing MEN-syndrome. Their children are therefore examined to determine whether they also have the predisposition for the disease. If a child has the predisposition, it is screened with the aim of detecting tumours at an early stage. For those affected, this can lead to feelings of anxiety or other psychosocial consequences.
Rachel van Leeuwaarde studies the psychosocial consequences of screening for tumours in children and their relatives. She is an internist-endocrinologist at the Cancer Center of the UMC Utrecht and is conducting the study in collaboration with Hanneke van Santen and Annemarie Verrijn Stuart of the Wilhelmina Children’s Hospital and Sasja Schepers of the Prinses Maxima Center.
This study will investigate the psychosocial consequences of screening for tumours in children and their relatives. For example, the quality of life and the fear that they experience in relation to tumours will be examined. It will also look at which factors cause a reduced quality of life.
The aim of this study is to improve the counselling of children and their relatives with MEN-syndrome. When it is clear which children and families are most vulnerable, tailor-made care can be offered at an early stage. This limits the long-term consequences for the patients.
