Lymphoma Working Party (LWP)
Study type:
Study number:
2024-R-09
Type of treatment:
Allogeneic
Autologous
Diseases:
Non-Hodgkin’s Lymphoma (NHL)
Short title:
TREND-PTCL
Primary objective:
We propose to analyze the outcome of auto-HCT and allo-HCT in END-PTCL recorded from 2011 to 2023 in the EBMT database, overall and according to refined evaluation of entities (EATL, MEITL and other END-PTCL).
Key inclusion criteria:
• Patients identified with any of the following entities:
- EATL
- MEITL
- other END-PTCL : Indolent T-cell (or NK-cell) lymphoproliferation of the gastrointestinal tract, Intestinal T-cell lymphoma NOS, Refractory sprue (type II refractory celiac disease).
• Adult patients
• First auto-HCT and/or first allo-HCT :
• Transplantation performed between January 2011 to December 2023
- EATL
- MEITL
- other END-PTCL : Indolent T-cell (or NK-cell) lymphoproliferation of the gastrointestinal tract, Intestinal T-cell lymphoma NOS, Refractory sprue (type II refractory celiac disease).
• Adult patients
• First auto-HCT and/or first allo-HCT :
• Transplantation performed between January 2011 to December 2023
Country:
All EBMT member countries
Principal investigator:
Olivier TOURNILHAC
EBMT Study coordinator:
Emmanuelle POLGE
Study coordinator email:
emmanuelle.polge@ebmt.org
EBMT Study Unit:
Paris 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:
DOB/YOB, gender
Medical data already reported to the EBMT Registry
Study Specific Questionnaire (MED-C)
Histological report
Recipients who may access the data:
Paris Study Unit
Statistical Unit
Expert review of the pathological report
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