Top Back to top

Outcome of haploidentical transplant in chronic granulomatous disease

Inborn Errors Working Party (IEWP)
Study type:
Study number:
Type of Stem Cell Treatment:
Allogeneic - Haploidentical
Inherited disorders
Short title:
CGD Haplo
Primary objective:
OS, EFS, GRFS, CRFS in CGD recipients of haplo-transplant
Key inclusion criteria:
Only first haplo-identical transplant will be included. Haplo-HSCT performed in rescue after failure of a first transplant (any donor but haplo) will not be included
All EBMT member countries
Principal investigator:
Benedicte Neven
EBMT Study coordinator:
Tiarlan Sirait
Study coordinator email:
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.
Research and Development of new and improved transplant, cell therapy and immunosuppression procedures.
Categories of personal data collected:
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:

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:
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