Paediatric Diseases Working Party (PDWP)
Haemoglobinopathies Working Party (HWP)
Study type:
Study number:
Type of treatment:
Allogeneic
Diseases:
Other non-malignant disorders
Short title:
Primary objective:
To report the outcomes of adult SCD patients undergoing allo-HSCT from an HLA-identical, related donor or haploidentical and unrelated donors, with the main end point being the successful engraftment and overall survival, disease free survival at a certain point in time.
Key inclusion criteria:
All consecutive SCD patients older than 17 years who underwent allo-HSCT between Jan 2010 and June 2020, regardless of conditioning will be included.
Country:
All EBMT member countries
Principal investigator:
Can Boga
EBMT Study coordinator:
Arnaud Dalissier
Study coordinator email:
arnaud.dalissier@upmc.fr
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:
DOB/YOB, gender
Medical data already reported to the EBMT Registry
Study Specific Questionnaire (MED-C)
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
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