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A Retrospective analysis of transplantation outcome for individuals with Advanced Systemic Mastocytosis (Adv-SM): Aggressive Systemic Mastocytosis (ASM), SM with associated hematologic disease (SM-AHD), Mast-cell leukemia (MCL) and Mast cell Sarcoma (MCS)

Chronic Malignancies Working Party (CMWP)
Study type:
Retrospective Studies
Study number:
42201071
Type of treatment:
Allogeneic
Diseases:
Myeloproliferative Neoplasm (MPN)
Short title:
Mast cell disorders
Primary objective:
Determine the PFS and the OS of patients with Adv-SM post allo-SCT
Key inclusion criteria:
• Patients aged more than 18 years.
• All patients with Adv-SM who received allo-SCT[
Country:
All EBMT member countries
Principal investigator:
Gandhi Damaj
EBMT Study coordinator:
Linda Koster
Study coordinator email:
cmwp@ebmt.org
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:
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
Rectification
Objection
Deletion
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