Dispelling myths about rare disease registry system development
Rare disease registries (RDRs) are an essential tool to improve knowledge and monitor interventions for rare diseases. If designed appropriately, patient and disease related information captured within them can become the cornerstone for effective diagnosis and new therapies. Surprisingly however, r...
| Main Authors: | , , , , , , , , |
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| Format: | Online |
| Language: | English |
| Published: |
BioMed Central
2013
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| Online Access: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4015362/ |