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Umbilical cord blood transplantation in patients with Fanconi anemia

Severe Aplastic Anaemia Working Party (SAAWP)
Study type:
Study number:
Type of Stem Cell Treatment:
Bone marrow failure
Short title:
Primary objective:
To describe outcomes after UCBT in patients with Fanconi anemia (FA) and identify associated risk factors.
Key inclusion criteria:
Inclusion criteria:
• Patients with diagnosis of FA who received an UCBT in EBMT centers
• Umbilical cord blood (UCB) grafts from related or unrelated donors
• Single or double UCB grafts
• Transplant period: 1988 through 2021

Exclusion criteria:
• Lack of diagnosis of FA
• Use of manipulated or expanded cord blood
• Previous allogeneic transplant
• Missing survival data
All EBMT member countries
Principal investigator:
Hanadi Rafii
EBMT Study coordinator:
Brian Piepenbroek
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.
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:

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