Historically, the medical and scientific community working on this type of diseases has faced several hurdle:
- Severe Data Fragmentation: the difficulty caused by disparate clinical, histology, MRI and genetic datasets that are isolated and not interoperable.
- Lack of Standardization and pipelines on procedures: the absence of harmonized procedures and consistent data capture methods and difficulty of interpretation of multimodal data.
- Complex Data Integration: the obstacle of attempting to link multi-modal data post-collection when it was not captured using unified ontologies.
- Data Privacy and Security Risks: fears related to the violation of privacy or the loss of sensitive patient data without a stable, long-term technical custodian.
- High Commercial Costs: the costs related to data acquisition and technical infrastructure sustainment that hospitals and academic institutions cannot afford.
The CoMPaSS-NMD Atlas was built specifically to bridge these gaps across borders and institutions