EU Establishes United Repository for Rare Patient Data and Standards for Collection

Each year, Rare Disease Day (February 28th) incites individuals and organizations to investigate and reform their rare disease efforts. This year, the EU Commission has made drastic changes which should not only help to accelerate research for conditions with some of the highest levels of unmet need, but should provide more ease in the process.

The Current Situation

There are approximately 600 patient registries in Europe. Of these, only a few are nationally based. Most are created and managed by advocacy groups, pharma companies, hospitals, or research institutions. They each collect different types of data. This is because they each truly have a different aim. Some are focused on research for new treatments while others are simply interested in things such as disease prevalence.

Another reason for this variation is because of the great variation in rare diseases themselves. For instance, even the time of presentation may vary. Cystic Fibrosis is a condition patients are born with while Huntington’s Disease can develop later on in life. If a registry is focused on just one type of disease, it will collect data in a different way.

There are over 30 million people living with a rare condition in the EU. That’s a lot of potential data that could be collected. However, as things were, there existed no standards for analyzing this data. Data was rarely shared across registries, let alone across country lines, because of this lack of uniformity.

Ultimately, this means slower research and worse outcomes for the very patients these registries were created to support.

European Platform on Rare Diseases Registration

To solve these issues, the EU Commission has decided to establish standards for data collection. In addition, they have created an online platform which merges patient data from registries across the continent, making it more accessible to researchers, policy-makers, and patients. The platform will include an overview of each registry and a repository of all of the different types of research variables used.

“Supporting the quality research that can enhance diagnosis and treatment outcomes – helping to improve the lives of patients and their families.”

The platform will be open to the public and provide viewers the opportunity to search for exactly what they’re looking for. By combining data into one place, scientists will be able to accelerate research studies much more quickly.

All patient data will be kept private by use of a pseudonym. No data will be trackable back to any individual patient.

The EU explains the importance of this new platform specifically in aiding the work of the European Joint Programme on Rare Diseases. Hopefully, we will see tangible affects stem from these new changes soon.

You can read more about these new projects here.


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