Bsbmt data registry update Julia Perry Head of BSBMT Data Registry

Bsbmt data registry Who are we? Where are we based? Julia Perry – Head of Data Registry Rachel Pearce – Statistician Marie Wilson – BSBMT & AN Senior Data Manager Ruth Paul – BSBMT Senior Data Manager Clementina Abamba – BSBMT Senior Data Manager (Oct 2017) Where are we based? Tabard House, Guy’s Hospital, London

Current/Completed registry projects 8th commissioning report has been completed and sent to commissioners and centres who have paid membership fees Long term outcomes for transplants done in 2009-2014 inc, D100 and D365 outcomes for 2015 transplants Retrospective studies (Voluntary, but important) BEAM v LEAM Study (1599 transplants) – closed, in analysis stage AN Genetics Study in Unrelated donors Allografts (2371 transplants) – data collection UK v EU 07 Benchmarking exercise (mandatory study): Allograft in Follicular Lymphomas 350 transplants, 32 centres – data collection

Transplant activity 2016

Transplant activity 2016 4398 Transplants declared from EBMT 2016 Activity Survey Data on website http://bsbmt.org/2016-activity/ To Date: 4100 transplants registered so approx. 300 missing/not registered 285 more transplants than 2015 Transplant activity declared v transplants registered per centre Will be sending centres email re missing registration soon 1938 2017 transplants registered to date

upcoming registry projects 9th commissioning report in preparation – 2010 to 2016 – call for follow ups and missing registrations Nov 2017 Data quality reports Missing Day 100 Day 100 Due Missing Postcodes, Ethnicity and Comorbidity Follow up due Discrepancies/missing information

Important Meetings/dates UK v EU Benchmarking Exercise – 1st deadline Friday 6th October 2017 BSBMT Education Day- Thursday 2nd November 2017, Cavendish Conference Centre Nov 2017: Call for follow ups 2010-2016 data 2nd DM Training Day Feb/March 2018 – Non London Location EBMT 2018 Lisbon, Portugal 18-21 March 2018 31st March 2018, deadline for FU/registration submissions

announcements EBMT 2018 Annual Conference Grants – more details to follow Please complete and return your feedback forms 