Goethe University in Frankfurt, Germany has been awarded a grant of more than one million euros as part of a large-scale project in Europe to standardise and make available clinical data. It’s hoped that by doing this, rare disease patients will benefit. You can read more about this project at the source news release here, at Goethe University’s website.
People who have rare diseases often have to go through extensive testing and a long period of waiting before reaching a correct diagnosis and, according to Goethe University, one of the factors that may be exacerbating this problem is a lack of standardised and shared information about the patient between healthcare providers. People who have a rare disease often have to visit multiple clinics, various experts, and undergo many tests, and this inevitably leads to a large amount of information about them being held by clinics. However, if this information is collected in different formats or languages, it may make it difficult for information to be shared between doctors, potentially leading to miscommunication or slowing diagnosis and treatment. Goethe University’s news release outlines how this may change with a new European Joint Project. A second potential benefit of this project is the ways in which it could help researchers, by allowing them access to a larger sample of data for analysis.
What the Project Involves
The European Join Program is aiming to produce a set of requirements for clinical data that can be used by different researchers. Goethe University is set to contribute to this goal by developing a set of tools that can standardise patient data. One of the ways this can be done is by creating software for patient registries that are disease-specific. This would allow for on-going data collection, leading to a standardised resource that could be easily used for analysis. According to Dr Holger Storf of the Medical Informatics Group, “Rare diseases […] greatly profit[s] from coordination at the European and international level.”
These developments would be part of a larger European project to share data, knowledge, and processes throughout Europe. There are also plans to develop a finical model that could be used to support a range of research projects focused on rare diseases.