ERN-EuroBloodNet Monitoring & Data Collection
The continuous monitoring of ERNs is based on a single data collection per year covering the period from January to December of the previous year.
Furthermore, to simplify data collection and reporting, DG Sante has implemented a data collection platform for ERNs Members and Affiliated Partners which is used to gather the number of new patients referred to the Healthcare Provider (HCP) and the use of Orphacodes.
Concerning the rest of the indicators, ERN-EuroBloodNet has implemented the "Continuous Monitoring Survey" to collect standardized information through a secured REDCap system.The ENROL Registry Module for the Collection of annual counts of patients with RHDs - EpiBlood has been developed to systematically collect standardized information on the annual counts of patients with RHDs through a secured REDCap system.
Epiblood, the ENROL registry module, collects annually the total number of patients and new patients affected by Rare Hematological Diseases (RHDs), contributing to the establishment of the disease population baseline (real number of patients). This baseline is required according to EMA quality criteria to understand the ENROL registry population coverage (patients included in the registry) and possible sources of bias.
ERN-EuroBloodNet Data Collection has been implemented using REDCap, a secure web platform for managing online databases and surveys. The survey is structured according to ERN-EuroBloodNet RHDs coverage into the following subnetworks:
- Myeloid malignancies.
- Lymphoid malignancies.
- Red blood cell defects.
- Bleeding-Coagulation disorders.
- Bone marrow failure and hematopoietic disorders.
- Hemochromatosis and other iron related disorders.
Aiming to facilitate your contribution to this action, we have created the following summary and documents:
| Platform | What | 2026 Deadlines | Information | Reated Documents |
|---|---|---|---|---|
| ENROL-EpiBlood (REDCap) |
- Number on New and Total patients by age and sex for the non-onco subnetworks of expertise. - Number on Total patients by sex for the onco subnetworks of expertise. |
From 2nd of March to 28th of April 2026 | The survey link will be sent to the reporters on the 2nd of March. | ENROL EpiBlood Documents |
| Monitoring survey (REDCap): report activities and outputs for your HCP | All activities (studies, publications, etc.) | From 12th January 2026 to 28th February 2026 | The survey link was sent to the reporters on 12th of January at 9:00. | |
| DG SANTE platform (patients' data): the collection of patients' data will take place on the DG SANTE platform like previous years, not in REDCap. Further practical details and timelines will be sent by DG SANTE. |
Indicator 2.1 The number of new patients referred to the Health Care Provider, with the diagnosis of a disease or condition that falls within the scope of the ERN. Indicator 5.5 The use of Orpha codes to code/classify patients. |
From 12th January 2026 to 28th February 2026 | The link is already open in the platform. Click here to access. | Granting access to the DG Sante ERN monitoring platform document. |
For further information or requests, please contact alba.albert(ELIMINAR)@vhir.org and giulio.sannasardo(ELIMINAR)@aphp.fr