What is a Registry?

In order to accelerate translational efforts (moving from basic laboratory research to meaningful health outcomes, such as therapies and treatments) related to the genetic changes related to autism and developmental delay, Simons VIP Connect is important for characterizing and understanding these genetic changes better. Not only will the SImons VIP Connect work toward a shared goal of providing valuable information for families and doctors to make the best care decisions possible, it will be important to help researchers decide what are the most important concerns to address. Some registries may also help scientists find out if there are any other patients who might be a good match for their research studies, like GenomeConnect.

 Collecting information from patients is very important, but protecting the privacy of people affected by the syndrome is also extremely important.  In order to protect your privacy, Patient Crossroads (the company that designed the registry software) has designed many safeguards.  Your child’s information will be “de-identified” so no one who looks at the data can identify you or your child.  Your child’s information will be assigned a code.  If a researcher is interested in learning more about your child, the researcher will ask the Patient Crossroads and our genetic counsellor to contact you.  A scientist will not be able to receive any identifying information about your child unless you give explicit consent for your child’s identity to be released to that researcher.