Join us for an enlightening episode of BioTalk with Rich Bendis as we explore the pivotal role of patient registries in rare disease research and treatment. Our guest, Harsha Rajasimha, MS, Ph.D., CEO of Jeeva Informatics Solutions and Founder and Executive Chairman of IndoUSrare, shares his extensive experience in clinical genomics data science and precision medicine.
In this episode, Dr. Rajasimha introduces Jeeva Informatics Solutions and IndoUSrare, his non-profit organization. He discusses the importance of patient registries in accelerating rare disease research, the current obstacles in the field, and the potential solutions.
We discuss the role of governments in rare disease research and treatment and the potential for collaboration with non-profits in clinical trials. Finally, Dr. Rajasimha shares the goals of the upcoming Indo-US Rare Summit at the GMU Campus in Arlington, VA.
Tune in for valuable insights from a leader in rare disease research and patient advocacy.
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Harsha is a serial entrepreneur with a background in clinical genomics data science and 17+ years of experience in precision medicine data research in academia, the National Institutes of Health, healthcare and life science consulting, and multiple startups. Harsha made a bold career move after losing a newborn child to a rare congenital disease in 2012 and his younger brother with juvenile diabetes in 2017. He decided to apply his years of postdoctoral training at NIH and FDA to take on social entrepreneurship. At Jeeva, Harsha leads the development of the decentralized eClinical cloud platform for accelerating therapies for rare and common conditions. He knew that technology is not the limiting factor and that patient-centered design guided by stakeholder needs and regulatory requirements would be critical ingredients of the continuously learning digital platform. By digitizing and automating manual repetitive tasks and reducing the logistical burdens on patients and study teams by over 70%, Jeeva accelerates the process of bringing new medicines or vaccines to diverse patients who need them anywhere by over 3x faster. Jeeva’s modular software-as-a-service (SaaS) platform is fully scalable and facilitates diverse patient enrollment, engagement, and evidence generation in clinical trials on any browser-enabled mobile device.
At IndoUSrare, Harsha is fostering cross-border collaborations between stakeholders of rare diseases in the US, India, and globally. Harsha has authored 17+ publications, book chapters, and patents. Harsha has received numerous Awards for his work in genomics, precision medicine and rare diseases including Lead India Foundation 2020 Award for leadership and outstanding achievement in rare diseases, a travel award to join the NGO Committee on Rare Diseases at the United Nations headquarters, New York City in Feb 2019, NTT DATA Healthcare Life Sciences Silver award for outstanding achievement 2017, Sanofi Genzyme patient advocacy leadership award 2016, Bioscience company of the year 2014, NEI director’s innovation award 2012 for building their genomics data infrastructure. Harsha earned his M.S. in Computer Science (2004) and Ph.D. in Genetics, Bioinformatics and Computational Biology (2007) from Virginia Tech.
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