The RADeep Annual Baseline is the yearly RADeep survey to estimate the accessible population of patients with Rare Anemia Disorders (RADs) in Europe.

Main objectives:

1. Assess the accessible RAD population in Europe.
2. Evaluate a key EMA quality requirement for RWD: representativeness.
3. Identify potential sources of bias in the registry.
4. Measure registry coverage over time.
5. Strengthen the scientific and regulatory value of RADeep.

To achieve this it will be launched from 2nd of March until the 28th of April through REDCap.

Please find the official documentation below:

RAB_2025_disease_groups: contain the list of the 27 disease groups covered by the survey, along with their ORPHA codes and specific diseases included in each of them.

RAB_2025_survey_template: survey structure with parameters to be reported agreed upon last DAC meeting on each disease group.

RAB_2025_key_information: contain all the important concepts to understand the survey and how it will be launched.

Do not hesitate to contact maximo.tartaglia(ELIMINAR)@vhir.org for any request.