Key challenges for patient registries – A report from the 1st workshop of the EHC Think Tank Workstream on Registries
Patient registries are an invaluable resource for furthering the understanding of rare diseases such as bleeding disorders, providing large, pooled datasets not achievable by other means of data collection. As well as supporting clinical care and research, registries must also be able to answer ques...
| Main Authors: | , , , |
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| Format: | Article |
| Language: | English |
| Published: |
Sciendo
2022-03-01
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| Series: | The Journal of Haemophilia Practice |
| Subjects: | |
| Online Access: | https://doi.org/10.2478/jhp-2022-0002 |