Sophia Zilber: Getting to quality research from patient registries
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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…
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