We have had a message from GenIDA asking for our help in getting the number of participants in the GenIDA database up from 60 to over 100. This is perfectly possible if just a few more of you could complete the questionnaire and if some who have started it, could input a bit more information. Being part of this database gives us a good chance of getting more research started and learning more about this complex condition. With Jacqueline Noonan now 90 years of age let’s do it for her and us. See the message from Genida below.
Ian Legg, Chair, NSA Trustees
The Strasbourg based GENIDA team is looking for more families to complete the GENIDA questionnaire. This questionnaire can be completed by or on behalf of any child or adult with one of the Rasopathies such as Noonan Syndrome, CFC and Costello syndrome. It can be found on the GENIDA website https://genida.unistra.fr
The collected responses are analysed and for other conditions this has already uncovered important new medical information. We hope to be able to do this for Noonan Syndrome and the other Rasopathies as soon as possible. By looking at the questionnaire answers (on an anonymous basis) we can identify the medications and the interventions that work best; we can find the outcomes that are unexpected and specific to the syndrome and that need further attention.
With more than 60 families already participating we have made a good start. GENIDA wants to initiate more work on the Rasopathies but they need more individuals and families with these genetic conditions to complete the questionnaire. Please help.