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Prospective study on the incidence and outcome of HHV-6 encephalitis in patients who undergo allogeneic haploidentical HSCT

Infectious Diseases Working Party (IDWP)
Study number:
Type of Stem Cell Treatment:
Allogeneic - Haploidentical
Complications: infectious
Short title:
HHV6 encephalitis after HAPLO HSCT
Primary objective:
Incidence of HHV-6 CNS infection in haploidentical setting in the period 0-100 days after transplant
Key inclusion criteria:
- any age
- diagnosis of AL, MDS, Lymphoma
All EBMT member countries
Principal investigator:
Katia Perruccio
EBMT Study coordinator:
Nina Knelange
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
Statistical 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:
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