Paediatric Diseases Working Party (PDWP)
          Study type:
    
Study number:
    8417031
      Type of treatment:
    Allogeneic
      Diseases:
    Other non-malignant disorders
      Short title:
    Primary objective:
    Key inclusion criteria:
    Country:
    All EBMT member countries
      Principal investigator:
    Elodie Gouache (Paris)   
      EBMT Study coordinator:
    Arnaud Dalissier
      Study coordinator email:
    arnaud.dalissier@ebmt.org
      EBMT Study Unit:
    Paris Study Unit
      Reason for processing personal data:
    Patients’ data is needed to be able to identify the patient and calculate age at any time (impact on SAEs and response to clinical medications). Health care personal data is part of the CV collected for evidence of proper qualification for running the trial.
      Categories of personal data collected:
    Medical data already reported to the EBMT Registry
      Recipients who may access the data:
    Paris Study Unit
      3rd-party processors of Personal Data on behalf of EBMT/Service provider:
    No
      Privacy notices
Article 6 lawful basis for processing personal data:
    Article 6.1 (a) - Consent (Collection)
      Article 9 basis for processing special category data:
    Article 9(2) (a) - Consent (Collection)
      Data Protection Impact Assessments
Rights available to individuals:
    Access
          Data portability
          Rectification
          Objection
          Deletion
      Is a Data Protection Impact Assessment required?:
    DPIA performed for EBMT Registry (WP & NIS Studies)
      Retention Schedule (if possible):
    at least 5 years after the final report or first publication of study results