New Collab to Give Rare Disease Project Access to Data Analysis Tech

Komodo Health announced it will provide rare disease patient advocacy organizations in the Chan Zuckerberg Initiative’s (CZI) Rare as One Network with analytics to improve earlier diagnosis, close gaps in care, and accelerate research for complex diseases.

The Rare as One Network supports patient-led organizations working to improve the lives of those impacted by rare diseases.

The 50 organizations in CZI’s Rare as One Network will now have access to Komodo technology, allowing for patient advocacy leaders to better identify patient cohorts, understand the diagnostic odyssey for rare diseases, identify health disparities, and connect patients to the best healthcare providers and researchers.

Additionally, the technology insights can help accelerate research opportunities for rare diseases that are often overlooked.

“We are excited to support the Rare as One Network organizations as they utilize Komodo’s software to address unanswered questions in their disease areas and better understand the diagnostic journey and impact of these rare diseases,” Heidi Bjornson-Pennell, CZI Rare As One program manager, said in a press release. “We believe in the power of data and technology to unearth the critical insights needed to address the unmet needs of these patient communities.”

One member of CZI’s Rare as One Network, PSC Partners Seeking a Cure, utilized Komodo’s software and data to provide educational services to medical professionals regarding the new  ICD-10 code for primary sclerosing cholangitis (PSC) and to promote other initiatives searching for a cure for PSC, a rare liver disease. 

“Our work with CZI’s Rare as One Network gives us an incredible opportunity to empower over 50 patient-led organizations with data-driven software and intelligence that can enhance their work to accelerate research, unlocking treatments and cures for rare disease,” said Web Sun, president and co-founder of Komodo Health. “Komodo will now be providing the critical insights needed for these advocacy groups to dig deeper into patient behaviors and patterns of care and put breakthroughs into the hands of patients faster.”

Komodo’s Healthcare Map offers a complete longitudinal view of real-world patient journeys, representing encounters with the US healthcare system for more than 330 million patients.

Access to Komodo software such as Prism will allow advocacy organizations to quickly discover insights on specific patient populations and understand patterns in disease and care trends.

Further, the tools can unlock detailed information based on geography, demographics, and disease stage to better identify rare diseases in patients and support early diagnosis efforts.