GenIDA – which stands for Genetically determined Intellectual Disabilities and Autisum Spectrum Disorders – collects health data and medical history on individuals diagnosed with a multitude of conditions. Dr. Koolen has worked closely with GenIDA to craft a series of questions to capture this data. The data is analyzed and helps us to better understand and characterize the syndrome.
This research opportunity is open to ALL individuals diagnosed with Koolen-de Vries Syndrome. Parents and caregivers are encouraged to sign-up with GenIDA and enter medical information regarding their child’s health history. As of November 2018, over 200 families have signed up and started entering data. KdVS Foundation is excited to see the community getting involved. Sharing this data with GenIDA and Drs. Koolen and de Vries is a critical step in further characterizing and understanding Koolen-de Vries Syndrome. Please read the statement from Dr. Koolen below and then sign-up today! Already signed up for GenIDA? Don’t forget to:
- Log-in and complete the questionnaire
- Set yourself a reminder to update information.
Read more about GenIDA on their website. Follow GenIDA on Facebook for periodic updates.