Disrupting the Traditional Registry Model
We started our company in 2007 with the belief that it was time to put patients at the center of a disruptive model for developing better treatments for diseases. We built an online data nexus. Our interactive platform enabled patients, advocacy groups, clinicians, researchers, and drug developers to access patient’s de-identified medical information. This is how PatientCrossroads got its name.
We designed our platform to be more powerful than a traditional research registry. Now you could pinpoint a subset of patients most likely to respond to a new treatment and expedite trial enrollment. Our patient data revealed patterns that you couldn’t see from basic health records. Our tools even let users rapidly cross-reference genetic information and complex health data.
We wanted patients to benefit from the data. We encouraged our clients to share study data directly with patients to keep them engaged and help them learn how other people manage similar health challenges.
Creating our Global Patient Insights Network
Early on we focused on providing tools to rare disease advocates. We wanted to help them collect enough patient data to compel researchers and drug developers to get involved. By 2016 we had developed programs for more than 400 health conditions through our work with over 100 advocacy groups, NIH, PCORI, academic centers, biotech and pharma companies. Today we continue to build what we now call Patient Insights Networks (PIN) because there are more than 9,500 diseases not yet represented in our global PIN.
Responding to the Changing Regulatory Landscape
In recent years, we’ve seen mandates from the FDA for Patient-Centered Drug Development, Obamacare and Patient Voice initiatives worldwide. Breakthroughs in genetic sequencing have unlocked the potential for Precision Medicine. More rigor is now required for long-term follow-up, especially when a drug is fast- tracked to bring new hope to patients. All of these factors helped crystalize our innovation pipeline and our Mission.
Today we remain focused on optimizing the search for better treatments. We build and support Patient Insights Networks that reduce costs, save time and deliver more comprehensive data than traditional registries.
We’ve built a profitable, independent company with a self-sustaining business model. We continue to support advocacy groups, at no charge, in exchange for sharing their data, because we believe it’s the right thing to do for patients. We also enable biotech and pharma companies to conduct targeted studies, mine existing data and improve long-term follow-up. Our new name, AltaVoice, reflects our commitment to amplify patient voices so their needs are heard, understood and addressed by everyone who can help improve their quality of life.