Rare Disease Report

Free Registry Software is Costly

APRIL 17, 2015

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:

  • Free does not mean free. Downloading software and installing it locally will entail:
    • Purchasing a server or renting computer space at a computer hosting company.
    • Paying a technical resource to learn the new system, install the software, perform regular backups and install upgrades and customizations as needed.
    • Assuming the liability of non-compliance with HIPAA and other privacy regulations.
    • Paying an internal registry administrator to be responsible for managing the registry program, review data and generate reports, provide support to participants who experience difficulty, and field requests from researchers for data.
  •  Sharing is limited. Each registry owner will necessarily collect disease specific and proprietary study data that cannot be shared with a global registry, resulting in only very high-level data being aggregated.
  • There is no motivation to share data because it takes effort for each organization to generate a file in a specific format on a regular basis that is then uploaded to a centralized database for researchers to access. 
  • Fragmented registries will result in participants registering in multiple registry programs. Because there is not a single global unique identifier, there is no way to identify duplicate participant records across systems without sharing identifying information. Participants are left to deal with the consequences of organizations unwilling to share data through a united registry program.

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.


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