Patient Database

Patient recruitment

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.

Patient Database

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

Database_v2.1

 Usher patient database for EUR-USH project