Raremark launches Xperiome Platform
Raremark, the online patient community in rare disease, has launched its patient-powered knowledge platform Xperiome aiming to help the pharmaceutical industry deliver innovative new therapies faster and smarter.
The Xperiome platform expands on Raremark’s vision of a world in which all rare diseases are treated by connecting everyone affected by rare diseases through shared, lived experiences, regardless of diagnosis, while providing customized patient journeys specific to their disease indication.
Harnessing Raremark’s over 11,000 active patients and caregivers, Xperiome brings together those affected by rare conditions such as idiopathic pulmonary fibrosis, myasthenia gravis, and urea cycle disorder. By using the Xperiome platform, pharmaceutical companies can recruit and retain hard-to-reach patients in research studies, improve go-to-market strategies, and evaluate the effectiveness of new treatments in a real-world setting.
“The missing puzzle piece is often the patient perspective, especially in rare disease, where patients are so much harder to find,” said Alex Garner, Chief Operations Officer. “The Xperiome platform enables pharmaceutical companies and contract research organizations to connect with these hard-to-reach communities and uncover key insights that make the drug development process smarter.”
The Xperiome platform has been created using Raremark’s deep domain expertise in drug development, machine learning, and behavioral science. It is a growing knowledge base of patient experiences built by people affected by rare diseases, which provides a 360 degree view of rare patient journeys and allows community members to share patient-orientated guidance to researchers based on their real-world lived experiences.
Pharma companies can leverage the Xperiome platform throughout drug development and commercialization to connect with the right patients at the right time, complete missing datasets and unlock real-world insights.
Improving Relationships and Diversifying the Site Selection Process
April 17th 2025In this episode of the Applied Clinical Trials Podcast, Liz Beatty, co-founder and chief strategy officer, Inato, discusses a number of topics around site engagement including community-based sites, the role of technology in improving site/sponsor relationships, how increased operational costs are impacting the industry, and more.
Behind the Buzz: Why Clinical Research Leaders Flock to SCOPE Summit
February 7th 2025In this episode, we meet with Micah Lieberman, Executive Conference Director for SCOPE Summit (Summit for Clinical Ops Executives) at Cambridge Innovation Institute. We will dive deep into the critical role of collaboration within the clinical research ecosystem. How do we bring together diverse stakeholders—sponsors, CROs, clinical trial tech innovators, suppliers, patients, sites, advocacy organizations, investors, and non-profits—to share best practices in trial design, program planning, innovation, and clinical operations? We’ll explore why it’s vital for thought leaders to step beyond their own organizations and learn from others, exchanging ideas that drive advancements in clinical research. Additionally, we’ll discuss the pivotal role of scientific conferences like SCOPE Summit in fostering these essential connections and collaborations, helping shape the future of clinical trials. Join us as we uncover how collective wisdom and cross-industry partnerships are transforming the landscape of clinical research.
