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Allogeneic HSCT in adolescents and young adults (AYA) with primary immunodeficiency diseases (PID)

Study number:
8427018
Short title:
AYA PID
Study status:
Data collection
Deadline for data collection:
Study design:
Retrospective study with additional data collection
Primary objective:
Evaluate the predictive capacity of pre-Allo HSCT HCT-CI and disease complications on OS and EFS
Key inclusion criteria:
• diagnosis of PID
• age at first HSCT ≥15 years
• allogeneic HSCT
• date of transplant 1.1.2000 – 31.12.2018

If you wish to participate in this study and have not been contacted by the data office please send an email to: iewpebmt@lumc.nl
Country:
 
Principal investigator:
Emma Morris & Michael Albert
Principal investigator email:
 
EBMT Study coordinator:
Sheree Hazelaar
Study coordinator email:
iewpebmt@lumc.nl

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The personal data provided will be processed according to the General Data Protection Regulation (GDPR 2016/679 ) and incorporated to a file property of EBMT which will be allocated in the EEA (European Economic Area) or in countries that are provided with the same level of protection for privacy such as countries that adhere to EU-US and Swiss-US Privacy Shield Frameworks.
Data Subjects have the right of access to his or her data and the right to rectification of any inaccurate or incomplete personal data. The Data Subject also has the right to withdraw consent, this wish will be respected, and the personal will no longer be made available. If the processing operation is unlawful the Data Subject has the right to request deletion of that data. Please write to data.protection@ebmt.org