Once Upon A Gene

Ciitizen – Take Control of Your Own Medical Records and Advance Research with Nasha Fitter

ONCE UPON A GENE - EPISODE 047

September 10, 2020

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Ciitizen – Take Control of Your Own Medical Records and Advance Research with Nasha Fitter

Ciitizen – Take Control of Your Own Medical Records and Advance Research with Nasha Fitter

Nasha Fitter is the mother of three daughters, one of which was diagnosed with a rare disease called FOXG1. After her daughter’s diagnosis, she got to work and co-founded the FOXG1 Research Foundation. She’s dedicated to leading the research strategy and finding a cure for every child in the world with FOXG1 syndrome. She’s here to talk to us about her work as the Director of the Rare and Neurological Disease Division for Ciitizen, a technology company that enables fast and seamless access to patient data. In this episode, you’ll learn about the most innovative medical record platform that will be open and accessible to parents, caregivers, clinicians, academics, bio pharma and researchers. Their goal is to eliminate the slow, manual and expensive processes that are currently used to collect data.

EPISODE HIGHLIGHTS

Tell us about you, your family and how you came to be a part of the rare disease community.

Tell us about Ciitizen and your role there.

How do you get started if you want to have medical records digitized?

Can doctors, geneticists and scientists access the platform and perform their own search?

If all these medical records are in this database, how do we protect our privacy?

How can parents and caregivers help move this platform forward?

What is a natural history study?

What final thoughts do you have for parents and caregivers?

LINKS AND RESOURCES MENTIONED

FOXG1 Research Foundation

https://www.foxg1research.org/