Inborn Errors Working Party (IEWP)
Study type:
Study number:
8427038
Type of treatment:
Allogeneic
Diseases:
Inherited disorders
Short title:
IDDA score
Primary objective:
Evaluate the predictive capacity of pre-Allo HSCT IDDA on OS and EFS.
Key inclusion criteria:
• diagnosis of CID or immune dysregulatory disorder
• HSCT at any age
• allogeneic HSCT
• date of transplant 1.1.2012 – 31.12.2022
• HSCT at any age
• allogeneic HSCT
• date of transplant 1.1.2012 – 31.12.2022
Country:
France
Germany
Italy
Netherlands
Spain
Sweden
Switzerland
United Kingdom
Principal investigator:
Thomas Fox & Emma Morris
EBMT Study coordinator:
Tiarlan Sirait
Study coordinator email:
iewp@ebmt.org
EBMT Study Unit:
Leiden 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:
DOB/YOB, gender
Medical data already reported to the EBMT Registry
Study Specific Questionnaire (MED-C)
Recipients who may access the data:
Leiden 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