The RADeep ultra Rare Anemia Disorder And hereditary spheRocytosis (uRADAR) aims to increase access to new treatments and clinical trials for this group of patients. Main goals are:

1.  To estimate prevalence and incidence of uRADs over the time, and rates of underdiagnosis. 

2.  To give visibility to the Expert Centers in EU that follow patients with uRADs and assess their patients' distribution according to severity. 

3.  To promote translational and clinical research, both pharma and academia sponsored, through the identification of target groups of patients according to main common inclusion and exclusion eligibility criteria. 

To achieve this last objective for 2024, a collection of agreggated data on uRADs is being performed until July 2024 (23:54 CEST). Find more details in the documents below:

 Documents Details of the documents

Information about the RADeep uRADAR strategy and How to make your contribution through the uRADAR REDCap module.

Disease Groups

Contains the list of the 22 disease groups of RHDs and the specific diseases that include each of them based on the ORPHANET classification.

You must provide aggregated numbers for each of the 22 Disease Groups including any of the specific diseases in the group.

To navigate the file:

  • Column B: you will find the list of the 22 Disease Groups.
  • Columns D: you will find the specific diseases included for each of the 22 Disease Groups.

Do not hesitate to contact maria.rodriguez.sanchez(ELIMINAR)@vhir.org for any request.

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