Sophia Zilber: Getting to quality research from patient registries

 Today is World Rare Disease day. It is only fitting that we speak to Sophia Zilber who is a statistical programmer, but also Board Member & Director of Patient Registries at the Cure MITO Foundation, about bridging the gap between the life sciences industry and patient registries in rare diseases. 

Sophia has experienced first hand how rare diseases lack both data and funding. Using her personal tragedy and statistical programming skills, Sophia engaged in patient advocacy groups attempting to collect patient data for research.  

Pharmaceutical companies are often looking for data sources to understand diseases. And patient advocacy groups are eagerly collecting data in the hopes that it will make a difference for finding treatment and cures. But in many cases the data collected is not usable for actual research purposes. 

Currently there is no guidance on how to create a patient registry that will contain a high enough quality of data to be used for research. Sophia is actively working to change that through multiple efforts, such as a Phuse working group  - and shares with us her advice for how to ensure data quality. 

Guest:

Sophia Zilber

https://www.linkedin.com/in/sophiazilber/
https://sophiazilber.carrd.co/

Cure MITO Foundation

https://www.linkedin.com/company/cure-mito-foundation/ 

Phuse:

https://www.linkedin.com/company/phuse/ 

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