EPISODE · Apr 3, 2024 · 35 MIN
Changing the Understanding of Rare Diseases with Data
from RARE-X · host RARE-X
Last year, Global Genes launched the inaugural Xcelerate RARE Open Science Data Challenge. The event brought together 24 teams of clinical researchers, data scientists, and biostatisticians from around the world. The teams competed to make the best use of patient-provided data to address significant challenges to research and medical management for patients with rare neurological diseases. A total of 27 different ultra-rare neurodevelopmental disease communities collaborated in the challenge. The results showed the value of open science environments where stakeholders with diverse backgrounds and perspectives come together to answer important healthcare questions. We spoke to Karmen Trzupek, senior director of scientific programs for Global Genes, about Xcelerate RARE, how the effort is helping to change the understanding of the neurodevelopmental diseases involved in the challenge, and why it more broadly validates RARE-X’s approach to collaborating with patient communities to collect high-quality, research grade patient data.
What this episode covers
Last year, Global Genes launched the inaugural Xcelerate RARE Open Science Data Challenge. The event brought together 24 teams of clinical researchers, data scientists, and biostatisticians from around the world. The teams competed to make the best use of patient-provided data to address significant challenges to research and medical management for patients with rare neurological diseases. A total of 27 different ultra-rare neurodevelopmental disease communities collaborated in the challenge. The results showed the value of open science environments where stakeholders with diverse backgrounds and perspectives come together to answer important healthcare questions. We spoke to Karmen Trzupek, senior director of scientific programs for Global Genes, about Xcelerate RARE, how the effort is helping to change the understanding of the neurodevelopmental diseases involved in the challenge, and why it more broadly validates RARE-X’s approach to collaborating with patient communities to collect high-quality, research grade patient data.
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Changing the Understanding of Rare Diseases with Data
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