According to the ERN-RND network agreement, every ERN-RND HCP has to submit data of all patients that were seen in one full calendar year in the scope of ERN-RND and that have consented to this data collection. This includes patients without determined diagnosis. Since 2021 ERN-RND has been collecting data in the ERN-RND registry, the number of HCPs which are able to submit data has been increasing every year.
For every year an analysis of aggregated data is done, using the datasets which were submitted by HCPs for the respective years (e.g. in 2024, the data from 2023). Every dataset refers to one patient. Some indicators are compared to those from years before, but not all data could be included in each analysis due to incompleteness of some datasets.
A respective OMIM code has been assigned to patients with a genetically confirmed diagnosis.
The following key indicators are shown in the figures every year:
- Number of HCPs submitting data per country
- Number of patients in total
- Number of patients per country
- Number of patients per disease group in total
- Number of patients per disease group regarding Orphacodes
- Number of patients with/without genetically determined diagnosis
- Most frequently used OMIM codes