#United States #San Francisco #Global Genes #RARE-X #Citizen Health

Global Genes Partners with Citizen Health to Enhance RARE-X

In a groundbreaking move for the rare disease community, Global Genes has announced a strategic partnership with Citizen Health aimed at revolutionizing the collection and management of data through its RARE-X platform. This collaboration is set to empower patients and their families while advancing research in the realm of rare diseases.

RARE-X has established itself as a vital independent research platform, engaging over 10,000 participants from 135 patient advocacy groups. Remarkably, 38% of these participants are located outside the United States, illustrating the global reach and significance of RARE-X. The official announcement of this partnership will be made live at the RARE Drug Development Symposium in Boston, where industry leaders and advocates will gather to discuss the future of rare disease research.

Under this enhanced framework, RARE-X will operate independently while utilizing Citizen Health's innovative technology to broaden the scope of data collection across multiple rare disease communities. This is a significant leap towards providing real-time value for patients, enabling them to contribute their experiences comprehensively. Over the years, RARE-X has meticulously developed an instrument library tailored for rare diseases, effectively encapsulating symptom severity, progression, and patient burden through validated tools and custom surveys.

One of the game-changing aspects of this partnership is the introduction of Ari, Citizen Health's AI assistant designed to alleviate the burden on families coping with rare diseases. Ari systematically collects medical records from over 4,000 healthcare institutions in the U.S., organizing this critical information into datasets that span more than a decade. This revolutionary approach integrates patients' lived experiences with clinical data, significantly enhancing the understanding of rare disease trajectories and informing the drug development process.

Moreover, RARE-X participants will have the autonomy to manage their data on both platforms, allowing them to opt-in or out of research initiatives at their discretion. This empowerment is particularly essential, considering the strain caregivers face—on average, they dedicate 53 hours a week to care for a child with a rare disease—compounded by additional demands from research participation.

Charlene Son Rigby, CEO of Global Genes, highlighted the importance of aligning research efforts with the needs of families impacted by rare diseases. She emphasized that RARE-X was built in collaboration with patient advocacy partners, aiming to provide robust data that furthers rare disease research while simplifying the data submission process for families. "Comprehensive data that harmonizes patient-reported experiences with clinical records is key to propelling urgently needed advancements in rare diseases. Our partnership with Citizen Health reflects this commitment."

Farid Vij, Co-Founder and CEO of Citizen Health, echoed this sentiment, noting that the collaboration aims to streamline the data collection process and focus on improving patients' daily experiences. Their shared vision seeks to merge the immediate needs of patients and families with the long-term objective of delivering better treatments more swiftly.

Research opportunities are enhanced under this partnership, as cohorts can now be defined with greater specificity based on factors such as diagnosis, genetic variations, symptom profiles, and treatment histories—all easily accessible through a single query. Additionally, the licensing of de-identified data generated will benefit advocacy groups and patients, ensuring that they receive a share of the revenue generated through research.

Advocacy organizations eager to learn more about this innovative partnership can visit Citizen Health and Global Genes' dedicated websites for RARE-X.

About Global Genes

Global Genes is a non-profit organization committed to alleviating the burdens faced by patients and families affected by rare diseases. Over nearly two decades, they have equipped advocates with vital tools and support, fostering connections that drive research and resource accessibility for more than 400 million individuals globally.

About Citizen Health

Headquartered in San Francisco, Citizen Health is reshaping the future of healthcare. By harnessing AI technology, community engagement, and extensive health data, they empower rare disease patients to take charge of their healthcare journeys, thus expediting the development of new treatments. With Ari, they aim to simplify the myriad challenges faced by families impacted by rare diseases.