In the operating model for rare disease, collaboration is crucial. Patients and patient advocacy groups are integral to that equation, as they bring the lived experience to the table and can guide all other stakeholders — from researchers to marketers — to the path of success.
Komodo Health is a tech company that partners with patient organizations, pharma and biotech companies, and academia in order to help them gather the information they need to guide rare disease treatments through development. From shortening the diagnostic journey to connecting patients to potentially life-saving clinical trials, Komodo’s next-generation analytics make it easy to unlock meaningful insights and create solutions that improve patient outcomes.
Partnership with CZI’s Rare As One Network
This week, Komodo announced that in an effort to help patient-led organizations streamline their research in rare disease, it is partnering with Rare As One Network, part of the Chan Zuckerberg Initiative, which supports nonprofits by offering tools, funding, and capacity-building support and training.
“We are excited to support the Rare As One Network organizations as they use Komodo’s software to address unanswered questions in their disease areas and better understand the diagnostic journey and impact of these rare diseases,” says Heidi Bjornson-Pennell, CZI Rare As One program manager. “We believe in the power of data and technology to unearth the critical insights needed to address the unmet needs of these patient communities.”
The partnership will give the 50 rare disease organizations that are currently working with Rare As One access to the tech company’s software and analytics.
“Komodo has done extensive work in rare disease, both with patient advocacy organizations and across life sciences, and it all comes back to our company’s mission, which is to reduce the burden of disease,” says Web Sun, president and co-founder, Komodo Health. “As a co-founder, I’ve been struck, meeting with so many patient advocacy leaders in rare disease, by how personal this mission is for them, and how little support they have often received.”
One member of the network, PSC Partners Seeking a Cure (PSC), has already used Komodo’s software and data to provide education to medical providers about a new PSC ICD-10 code and to promote other initiatives in the search for a cure for primary sclerosing cholangitis (PSC) – a rare liver disease effecting 30,000 patients in the U.S.
Collaborating with Komodo in 2019, the nonprofit gained a deeper understanding of referral patterns across institutions and patient flows across systems of care. Through Komodo Health’s comprehensive healthcare map and analytics platform, PSC Partners was able to track the adoption of PSC’s ICD-10 code (K83.01) across the U.S. helping to establish ground truth on PSC epidemiology, educate providers, target research grants to areas of most need, and set a higher standard of care for patients.
Komodo says it has 330 million patient healthcare encounters in its database, creating the industry’s largest and most complete longitudinal view of real-world patient journeys. Access to Komodo software will enable advocacy organizations to quickly surface insights on specific patient populations to understand nuances in disease patterns and care trends. The technology and insights will also help accelerate research opportunities for rare diseases that are often overlooked.
“We fundamentally believe in the power of data and technology to help these patient-led advocacy organizations dig deeper into patterns of care and put breakthroughs into the hands of patients faster,” Sun says.
The first time Komodo joined forces with a patient advocacy group was with the Cholangiocarcinoma Foundation (CCF) in 2018. Komodo gave access to its technology to help the foundation better understand the rare bile duct cancer, the newly emerging therapy options, and to educate HCPs and community oncologists to support earlier detection.
“Our insights allowed CCF to connect patients with multidisciplinary specialist providers via a Komodo-powered ‘specialist finder’ and to identify referral patterns between community oncologists and medical oncologists based in top academic centers and relevant diagnosis codes,” Sun says. “This allowed for the creation of a nationwide database of specialists and systems to proactively identify and address gaps in care.”
Beyond the nonprofit world, Janssen R&D is using the software to optimize study feasibility, investigator and site selection, and patient recruitment for clinical trials in several therapeutic areas including multiple rare diseases, ultimately driving higher throughput for trials and getting life-saving therapies to patients faster.
“Rare disease research and advocacy comes with many unique challenges. To start, how do you even find the patients you want to support or study when there are only a few patients diagnosed a year?” Sun says. “We can directly address many of the different pain points that come from working in disease areas with often very small patient populations.”
