We recently launched a multinational clinical trial: Clinical and Genetic Examination of Usher Syndrome Patients’ Cohort in Europe (https://clinicaltrials.gov/ct2/show/NCT01954953). Currently we are recruiting patients within multiple European countries.
Usher syndrome is a rare disease, thus a large population is needed to set up a database of Usher patients, which represents a crucial prerequisite for the preparation of clinical trials. To date existing databases and rare material collection are local, small and not accessible or standardized. It will be developed and maintained European wide Eur-USH database (P4), where up to500 Usher syndrome patient genotype/phenotype related data will be uploaded using harmonized clinical record forms.
Eur-USH database advantages:
- User friendly interface and support with user manuals
- High quality phenotype and genotype description (all partners within EVICR.net )
- Harmonization with clinical report forms
- Multiple visits option for disease progression analysis
- Data export extensions
- Multimodal image upload platform
- Temporal datasheets for statistics
- Algorithms for genotype and phenotype correlation
- Regular database updates
- Database managed by the team of clinician and IT specialist
- Possible access for clinical centers out of consortium on international level
- Possible extension and updates in cooperation with patient organizations
European Research Projects on Rare Diseases driven by Young Investigators