Ciitizen Research Opportunity

August 2, 2022

Ciitizen Research Opportunity

Dup15q Alliance has been presented with a new opportunity provided by Invitae, a leading medical genetics company, through their health data platform, Ciitzen.  This platform will not only rapidly provide you YEARS’ worth of your child’s medical data, but it will also provide researchers and pharmaceutical companies de-identified data with your consent.

What is Ciitizen?

Ciitizen is an online technology platform that helps patients get more out of their health records while providing the opportunity to advance research for disorders like dup15q syndrome. 

How does Ciitizen work?

With your consent, Ciitizen will request your child’s medical records on your behalf and load them to their profile. Clinical data will be organized and summarized, free of charge. Caregivers retain full control of the patient’s health records.  This gives parents years worth of records in a easy to follow format.  

How does Ciitizen advance research?

With your consent, clinicians, researchers and biopharma can access deidentified data to aid in research through Ciitizen’s databank of medical and survey data collected from children and adults living with rare disorders, to be used for future research needs in collaboration with academic and pharmaceutical researchers (the “Databank”). This data could also be linked back to the Dup15q LADDER Database

What are the benefits of joining?