UK research on Cornelia de Lange Syndrome
The Cerebra Centre for Neurodevelopmental Disorders is organized through the School of Psychology at the University of Birmingham. Their work focuses on difficulties experienced by children and adults who have intellectual disabilities, autism spectrum disorders and genetic syndromes. Specifically, those that are associated with developmental delays. Cornelia de Lange Syndrome (CdLS) is one of the six conditions studied.
Ms. Laura Groves, Dr. Caroline Richards and Prof. Chris Oliver recently published an anxiety guide for people with CdLS, "Anxiety in people with Cornelia de Lange syndrome" (2016). Areas like communication, avoidance and decision making are highlighted, and may be helpful tools for caregivers.
You can find general statistics and a series of articles regarding different facets of CdLS at the links provided below.
Interactive fact website: http://www.findresources.co.uk/the-syndromes/cornelia-de-lange/key-facts
Article database. Select the syndrome tag "Cornelia de Lange" to filter: http://www.findresources.co.uk/media?