The Severe Aplastic Anaemia Working Party of the EBMT is working on two initiatives to improve availability and quality of the registry data. The first one is a Data Quality Initiative (DQI) we want to use to improve the quality of the data already available in the EBMT registry database. The second initiative is about the registration of patients receiving only immunosuppressive treatments (so no HSCT), as we see a growing interest to perform studies in this patient population.
If you are a centre registering patients with Bone Marrow Failure in the EBMT registry database, we would like to know whether you are interested in participation in one or both of the described initiatives. Therefore we kindly request you to fill out the online survey that is available through the following link: https://www.surveymonkey.com/r/JHKP8KK.
Completing the survey should not take more than 10 minutes. We would be very grateful if you could fill out the survey before November 30, 2016.
For more information on these initiatives, please contact Cora Knol of the EBMT Data Office via firstname.lastname@example.org