Understanding speech and language difficulties in children with KdVS

We know that children, adolescents and adults with KdVS experience speech and language difficulties. Yet there has been no detailed study of the specific problems experienced across speech (articulation), language (vocabulary and grammar) and literacy (reading) skills in KdVS. A lack of detailed characterisation of the syndrome has prevented development of targeted speech therapies.

We are working with families affected by KdVS and their treating clinicians to provide the first comprehensive, international study of communication difficulties in KdVS. We have developed a protocol for individuals with KdVS who find verbal communication difficult (non-verbal protocol) and for children who are verbal. We appreciate that different clinicians may use different assessments. Therefore, we would like to speak further with individual families and clinicians to adapt the protocols where necessary.

Thank you for considering taking part in the study. We look forward to working together to improve current management of the condition to improve health and well being for individuals and families affected with KdVS.

 If you want to participate, we ask you to:

1. Read the Parent/Guardian Information Statement carefully and to sign the consent form. The signed consent form will be returned back to the speech therapist involved in the study, Dr. Angela Morgan (address below) with a copy of the document placed in your medical file.
2. Contact your local speech therapist and ask them to complete one of the two standardised protocols:
   1. for children who are verbal*
   2. for children who are largely non-verbal*
   *PLS4 Division of Verbal and Non-verbal; ASHA FCM AAC Comprehension Production Scales
   
   Your therapist can e-mail Angela Morgan directly to discuss any aspects of the study further.
3. Send the results of the speech and language characterization to:
   
   Dr. Angela Morgan
   Hearing, Language and Literacy Group
   Murdoch Childrens Research Institute
   Flemington Road, Parkville, Melbourne,
   Victoria 3052,
   Australia
   Phone: +61 3 8341 6200; Fax: +61 3 9348 1391
   Email: Angela.morgan@mcri.edu.au
   
   
4. Please provide your contact details (including e-mail) so that a summary of the results of the study can be sent to you on completion.