1. EBMT Registry Update Shelley Hewerdine
Data Management Lead, EBMT Registry
BSBMT Data Manager Training Day, London, 21 September 2017

2. The Registry, the backbone of the EBMT
Data submitted by > 600 centres, including centres from outside Europe
Many partners (national registries, donor registries)
Data on > 600,000 HSCT procedures
The Registry has direct impact on clinical practice, leading to improvement in patient outcomes and quality of life

3. The registry database has become more complex
In the 70s, one registered
patient had:
1 diagnosis
1 transplant
1 source of cell
1 type of cell
1 donor
1 centre
1 country
Nowadays, we have seen patients registered with:
Up to 3 diagnosis
Up to 6 transplants
Up to 3 sources of cells
Several types of cells
Up to 3 donors
Up to 3 centres
Up to 2 countries
Urgent need to upgrade the Registry to meet current transplantation needs for the wider HSCT and cell therapy community

4. Why we need to upgrade the Registry
Current system was developed more than 15 years ago
Advances in treatments = more complex data structure
New challenges such as technical, medical and legal requirements
The requirements for high quality outcome data are increasing
EBMT has a multinational platform that can meet these challenges now and in the future

5. All stakeholders involved in the HSCT field will benefit from the new Registry
Transplant centres
Industry
Patients
Researchers
Health authorities
Cord blood banks
Donor registries
National registries

6. Project Progress so far
In Spring 2017, EBMT appointed Elsevier as system supplier
Product name is MACRO
Introduction video
Example Data Entry & Data clarification screen:

8. Example:
Create and respond to data clarification requests

9. Project Progress (continued)
Requirements have been elaborated on
Software development plan completed
New Project Manager (Nigel Brook) joined EBMT team
8 EBMT staff received MACRO basic training
Data entry form development well underway
Registry team has completed the first round of testing
Data migration plan being enhanced
Detailed centre training plan will be developed in collaboration with our partners - national registries
39 out of ??? Forms created

10. Next steps Finalise registry definition (data structure & forms)
More testing
Software development/customisation over next 12 months
Much more testing!
Target Go live by end

11. Collaboration with Data Managers
The EBMT will liaise with your national registry regarding the testing and training
THANK YOU FOR ALL YOUR SUPPORT WITH THE EBMT DATA!
Any questions or suggestions about the project or EBMT Registry in general? Please contact EBMT / BSBMT
EBMT contact
->Presentation of Data Management Programme at EBMT 2018 (Khrystyna)