The study has been approved by ESID.
Proposed by: Alexandra Laberko/ Srividhya Senthil/ Andrew Gennery
Call for participation
We are commencing a EBMT study to capture the data on RAS associated Lymphoproliferative Disorder (RALD) outcomes post HSCT. We are also interested in knowing more about the less well understood characteristics of this orphan disease and would like to extend this study to RALD patients who have not had a transplant and managed otherwise and we have contacted the ESID registry. This study, we feel, will significantly enhance our understanding of this disease better, to better delineate the sub-population who might benefit from HSCT and to look into appropriate conditioning/ donor source, to identify unique complications of the transplant and get a better idea on outcomes of such a transplant.
We would highly appreciate if you could let us know if you have such RALD patients (both transplanted and managed otherwise) within your centre and contribute to this study.
Please get in touch us and we can send the data collection sheet. Below are the email addresses to contact:
Alexandra.laberko@gmail.com
Srividhya.senthil@mft.nhs.uk
Andrew.gennery@newcastle.ac.uk
