In a perfect world, there would be a single worldwide patient registry for each of the 7,000 known diseases. Multiple advocacy organizations would endorse the same disease registry while maintaining their branding, researchers around the world could access the data and multiple pharmaceutical companies could use the data for recruiting into clinical trials and studies.
Patient registries have matured from a ‘nice to have’ to a ‘must have’ for any rare disease community, but all too often the cost of custom registry solutions exceed what rare disease advocacy organizations can afford. To address this need, there are multiple programs offering free registry software. The idea is that any organization can download the free software, install it locally on private servers and begin collecting data. Free registry software should be as easy as downloading Microsoft Word and running it on a personal computer. The data collected from each registry would then be consolidated into a global disease registry that provides equal access to researchers and disease stakeholders.
On the surface, this solution seems ideal – give organizations free registry software to download, collect patient data and then aggregate the de-identified information globally. In practice, this is a flawed strategy because:
Think about Facebook, what would happen if Facebook gave away their software for free. Organizations could install it locally, people could create profiles, but the value of the system is lost because the data is fragmented across hundreds or thousands of ‘private Facebooks’. Users would register in multiple Facebook groups all managed by organizations which collect different data and enforce different data access rules. Even if Facebook wanted to aggregate all of the data into a ‘global Facebook’, once established as a custom program, there would be little incentive for groups to share their data. This is the situation with ‘free registry software’.
PatientCrossroads takes a different approach. PatientCrossroads CONNECT is a single database, kind of like Facebook. Each organization can have a branded landing page, like a Facebook company page. Data is managed in a single database, and organizations that represent the same disease area may share a common data collection schema. A subset of data are collected across each organization. Some data can be collected and not shared publicly, but it’s still in the same database allowing it to be made accessible to researchers without moving and reconciling data. This results in truly free registries managed by registry experts responsible for protecting the privacy and security of participants and their data.
Installing free patient registry software may sound great, but for those organizations that have limited resources, funding, and IT expertise, downloading and using free software comes at a hefty price.