Clouds of Care joins the DATAcc by Digital Medicine Society (DiMe) led effort together with industry leaders across medical, pharma, biotech, MedTech, regulatory, and patient advocacy groups in advancing the research of a core set of digital endpoints for pediatric rare disease.
Children with a rare disease, their families, and care providers are in a race against time. With 95% of rare diseases lacking approved treatments and an average diagnosis time of 4.8 years, as many as 30% of children with a rare disease do not live to see their 5th birthday.
Digital endpoints are proven to speed the development of life-saving therapies, optimize and accelerate pipeline prioritization, and reduce cost. They also enable decentralized clinical trials with high-quality data collection to ensure lifesaving therapies are delivered to children where and when they need it.
And while children are too often the last to benefit from advances in health care, investments in pediatric digital health are growing. Several recent developments, such as the creation of the Rare Disease Innovation Hub at the FDA, underscore the timely opportunity to incorporate a unified core digital measures set.
Developing this core set of digital measures will provide researchers and developers with an efficient platform to rapidly create meaningful, broadly accepted, high-quality digital clinical measures and endpoints. They will serve as a global resource to drive innovation, streamline drug development, and reduce risks, accelerating the delivery of new therapies.
Together, we will create a future where 200 million children no longer wait years for a diagnosis or treatment that can save their lives.
