Top Back to top

Clinical and immunological outcome of CID patients with hypomorphic RAG mutations following HSCT

Study number:
Short title:
Study status:
Data collection
Deadline for data collection:
Study design:
Primary objective:
Key inclusion criteria:
Data are collected from any transplanted RAG 1/2 deficient patient who presented with >300 T-cells independent of age. Data collection will include detailed information prior HSCT (clinical, genetic and immunological).

Exclusion criteria, besides classical SCID patients, are Omenn phenotype and T-cells due to materno-fetal transfusion, or patients not having been treated by HSCT.

If you wish to participate in this study and have not been contacted by the data office please contact:
Principal investigator:
Catharina Schuetz & Benedicte Neven
Principal investigator email:
EBMT Study coordinator:
Sheree Hazelaar
Study coordinator email:

Need help?

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