Children with (potential) developmental delays / disorders and participation restrictions
- Connective tissue disorders (including Marfan and Ehlers Danlos syndrome)
- Young infants (0-4 years of age) who have or are at risk for developmental delays, especially infants born very preterm or dysmature.
Mission of the research, and the focus of attention
Our research focusses on children who are (potentially) delayed in their development, as well as their parents (family dynamics). The ultimate aim is to improve their outcomes, including their participation in society, and health care. Therefore, our research projects contribute to gaining insights (clinimetrics, clinical reasoning, risk profiling) in the outcomes and needs of this population (child and parents) as well as developing and innovating tailored interventions. Parental participation plays an import role in our research, and ensures that the projects are also relevant for the population. For very preterm infants and their parents, research focusses on responsive parenting intervention and the implementation of this intervention in the Netherlands.
Research institutes, (important) partners in research
- Amsterdam Reproduction and Development
- Amsterdam Movement Sciences: Restoration and development
- Center on the developing child, Harvard University
- Mattijs Alsem, MD PhD
- Prof. Raoul Engelbert, PhD
- Martine Jeukens-Visser, PhD
Most important publications
- Flierman M, Koldewijn K, Meijssen D, van Wassenaer-Leemhuis A, Aarnoudse-Moens C, van Schie P, Jeukens-Visser M. Feasibility of a Preventive Parenting Intervention for Very Preterm Children at 18 Months Corrected Age: A Randomized Pilot Trial. J Pediatr. 2016 Sep;176:79-85.e1.
- Van Hus JW, Jeukens-Visser M, Koldewijn K, Geldof CJ, Kok JH, Nollet F, Van Wassenaer-Leemhuis AG. Sustained developmental effects of the infant behavioral assessment and intervention program in very low birth weight infants at 5.5 years corrected age. J Pediatr. 2013 Jun;162(6):1112-9.
- Engelbert RH, Juul-Kristensen B, Pacey V, de Wandele I, Smeenk S, Woinarosky N, Sabo S, Scheper MC, Russek L, Simmonds JV. The evidence-based rationale for physical therapy treatment of children, adolescents, and adults diagnosed with joint hypermobility syndrome/hypermobile Ehlers Danlos syndrome. Am J Med Genet C Semin Med Genet. 2017 Mar;175(1):158-167. doi: 10.1002/ajmg.c.31545.
- Juul-Kristensen B, Schmedling K, Rombaut L, Lund H, Engelbert RH Measurement properties of clinical assessment methods for classifying generalized joint hypermobility-A systematic review. Am J Med Genet C Semin Med Genet. 2017 Mar;175(1):116-147. doi: 10.1002/ajmg.c.31540.
- Scheper MC, Pacey V, Rombaut L, Adams RD, Tofts L, Calders P, Nicholson LL, Engelbert RH. Generalized Hyperalgesia in Children and Adults Diagnosed With Hypermobility Syndrome and Ehlers-Danlos Syndrome Hypermobility Type: A Discriminative Analysis. Arthritis Care Res (Hoboken). 2017 Mar;69(3):421-429. doi: 10.1002/acr.22998
- Alsem MW, van Meeteren KM, Verhoef M, Schmitz MJWM, Jongmans MJ, Meily-Visser JMA, Ketelaar M. Co-creation of a digital tool for the empowerment of parents of children with physical disabilities. Research Involvement and Engagement 2017 3:26.