How to request data

Anonymous data means data with no risk of re-identification by applying adequate safeguards. De-identified data means that direct or indirect identifiers (i.e. pseudonym) have been removed.

Pseudonymised personal data held in RADeep is processed in a manner that only anonymous or de-identified data will be transferred to researchers or other third parties (patients' associations, policy makers, industry) in order to contribute to projects whose objectives are directly connected to improve healthcare provision to individuals living with a rare anaemia disorder, thus connected to RADeep's aims. 

Third parties interested in accessing data held by RADeep will be required to:

  • Submit a Data Request Form that details the scientific merit of the project for which the data is needed.
  • Requests are reviewed by a Data Access Committee composed by both health professionals and patients' representatives that ensures that the request aligns with the purpose of RADeep and Policy. Personal details about the researchers are also reviewed to ensure they are suitably qualified and have a track record of integrity as researchers in this area.

Once the Data Access Commmittee approves the request, a Data Transfer Agreement will be signed regulating terms and conditions for the use of data, including:

  • Commitment to no attempt to re-identification, including merging RADeep's data to other sources of data and
  • Commitment to no attempt to directly contact the patients

Researchers may come from both public and private institutions in any country, including countries without the requirements foreseen in the European legislation in terms of data protection. However, all researchers and institutions will be required to sign legal agreements respecting the EU legislation and committing them to use the data only for the purpose intended and authorised.

All the approved users of information will be publicly listed at Projects section.

Euro Blood Net