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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:
Research and Development of new and improved transplant, cell therapy and immunosuppression procedures.
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