Ciitizen’s mission is to empower seven billion citizens across the planet with all of their health data. When you control your data, you have more options. For your own care, and to advance research for others.
Observational Studies and real-world evidence are critical to the drug development process. Ciitizen has developed a new method to make this process easier.
A next-generation, digital Observational Study for SCN2A-related disorders is expected to facilitate:
- Informing clinical researchers how a disease changes over time
- Enabling better endpoint selection to use in clinical trials
- The connection between mutation types and symptoms to facilitate targeted therapies
- Reducing the time it takes to study new medicines in clinical trials
- Speeding up the time to get therapeutics to patients
- The use of data as a placebo (instead of actual patients) in a clinical trial
This study will complement the International SCN2A Natural History and real-world evidence studies for SCN2A-related disorder patients. Become a Ciitizen and help advance research and accelerate treatments by clicking here!
Please note that this is only available in the US however Ciitizen plan to expand globally starting in April.
Virginie McNamar is the Project Manager for Neurological and Rare Diseases at Ciitizen and Patient Engagement Director, at Syngap Research Fund. She has been involved in the rare disease community since 2016, the year her son Ty was diagnosed with Syngap1, a rare genetic disorder.
Virginie is originally from France and before her position at Ciitizen, worked for 14 years as a Product Director for a software company. You can read Virginie’s blog here.
Ms Kris Pierce RN MHSc MWellness, is a rare disease advocate and mother to Will who has SCN2A. Kris has held a range of board, project management, advocate and consumer representative roles and has been instrumental in working with local, state and federal governments to secure funding for multi-million dollar projects. Kris is highly skilled in building teams to work together collaboratively and is a co-founder of Genetic Epilepsy Team Australia (GETA) and SCN2A Australia, and a RARE Global Advocacy Leadership Council member.