ONCE UPON A GENE - Episode 071 - Accelerating Clinical Research - Harsha Rajasimha, Founder and CEO or Jeeva Informatics
After losing his child to a rare congenital disease in 2012, Harsha Rajasimha applied his years of post-doctoral genomics data research experience at National Institutes of Health to develop a technology platform to accelerate clinical research. As the Founder and CEO of Jeeva Informatics and Founder and Chairman of the international humanitarian nonprofit Indo-US Organization for Rare Diseases (IndoUSrare), he's on a mission to bring fresh perspectives and innovation to get faster cures by engaging patients and participants in clinical research.
EPISODE HIGHLIGHTS
How did you become involved in the rare disease community?
I was a genomics data scientist, going through my day-to-day life at the National Institute of Health at the Cancer Institute and the Eye Institute. By 2010, I had published over 15 articles and was enjoying my job. In 2012 we had a child born with a rare congenital disease, Edward Syndrome and the baby wasn't viable at birth. That opened my eyes to the other side of the coin. Up to this point, research was all on the data side, but I wasn't as empathetic or aware of what happens to the patients and families going through rare genetic disease experiences. That led me to social entrepreneurship and I decided to apply my years of post-doctoral research experience to accelerating clinical research, faster diagnostics and therapies for rare diseases.
How did you know you wanted to do something more meaningful with your experience?
It took several months of grieving, soul searching and going over what went wrong. I did basic research about what happens in the rare disease community in the US and learned about NORD and Global Genes. What struck me was that I couldn't find any policy framework, definition of rare disease or organization to advocate for rare disease in India. It became clear that it was an obvious place to start. In February 2013 I visited the Bangalore India Bio Conference and met a number of key stakeholders there to pull together like-minded individuals and form a non-profit which became the Organization for Rare Diseases India. The diagnosis and treatments of rare diseases were happening in India, but there wasn't an organized or national effort happening.
What is the mission of the Organization for Rare Diseases India and how does it connect with bringing the culture of the rare disease community in India to the US?
The Organization for Rare Diseases India is primarily focused locally and is nationally focused to raise awareness through media, education and awareness events and medical education programs. I served as a Co-Founder and Chairman on the board until last year and I moved on to start the Indo-US Organization for Rare Diseases with a focus on building collaboration and connectivity between India and the US.
How is Indo-US Organization for Rare Diseases connected to Jeeva Informatics?
There's no connection except that they both have the same vision of accelerating medical research. Indo-US Organization is focused on advocacy, collaboration and education. Jeeva Informatics is focused on developing technology innovations. Jeeva is an investor-backed technology startup on a mission to accelerate clinical research through cloud based software that enables remote, touchless patient recruitment and electronic inform consent and data collection in patient registry programs, natural history studies and other clinical research studies.
What's the patient related role of Jeeva through the clinical trial process?
We took a lot of time talking to patients, advocates, investigators, hospital sites, research coordinators, sponsors and regulatory agencies before starting to build the product. We asked and listened and heard that the key complaint of patients was that they didn't get results back after a clinical trial was completed and that the travel requirements were burdensome. Taking this patient perspective into account, we started building and are about to offer a free trial of the software to some patient registries, pediatric hospitals and university academic medical center studies that can be configured rapidly and get faster data collection with little or no in-person travel involved.
How can parents and small advocacy groups engage with you and connect in some way?
I invite everyone to join the Indo-US Organization Patient Alliance program. It helps to combine forces and build strength with counterparts across the world. If you're planning your patient registry, natural history study or other clinical research study for your rare disease community, talk to us about how we can support your study.
LINKS AND RESOURCES MENTIONED
ONCE UPON A GENE - EFFISODE 015 - Show Your Stripes
Indo-US Organization for Rare Diseases
Indo-US Organization Patient Alliance
Organization for Rare Diseases India
Once Upon A Gene TV on The Disorder Channel
TUNE INTO THE ONCE UPON A GENE PODCAST
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