Submit clinical data via GenIDA
We encourage parents to share clinical information on their child with KdVS. By doing so we can describe the full spectrum of the syndrome including longitudinal data. In fact, the parents are the expert and have answers to many questions. It is up to researchers and clinicians to collect, to summarize, and to interpret the data.
Many parents already submitted data via the syndromemonitor. This is very much appreciated and provides us with valuable information.
For the collection of additional clinical data, we collaborate with professor Jean-Louis Mandel in France. He launced the GenIDA international project in early 2014. It is a social network that aims at collecting data on the natural history, medical complications, behavioral troubles and responses to treatments for individuals affected by genetically determined intellectual disabilities and/or autism spectrum disorders.
The syndromemonitor andf GenIDA are comparable. Therefore the KdVS data in the syndromemonitor can easily be transfered to GenIDA. The advantage of GenIDA is that it is a robust system that wil allow us to perform extensive data analysis. This will result in a better description of the KdVS including the course of the condition over time, management and treatment options.
Parents can submit clinical data via GenIDA here.
There is no need to fill out GenIDA if you already filled out a KdVS questionnaire before. Everything will be transferred in the near future. If so, you will receive the GenIDA login data by email. A medical student in Nijmegen, the Netherlands, will work on the KdVS data. She will check the data and might contact you for further information.
The GenIDA questionnaire includes numerous pages (as does the syndrome monitor). We will work on a shorter version of the questionnaire. Limited data on 300 children might be better than extensive data on 50 children.