The Role of the BSBMTCT Data Registry

Introduction

Stem cell transplantation (SCT) is an increasingly important treatment modality in patients with haematological malignancies and, in many diseases, represents the only curative option. Technological improvements over the last two decades have reduced the toxicity of both autologous and allogeneic transplantation at the same time as enhancing their ability to deliver curative therapy. As a result the number of patients in whom SCT is indicated has steadily risen in the last two decades and this has resulted in a significant increase in the number of transplants performed in the U.K

Collection of accurate clinical data is a pre-requisite for the delivery of high quality clinical care, and the British Society of Blood and Marrow Transplantation and Cellular Therapy (BSBMTCT) has made the establishment of a U.K Transplant Registry a priority since its inception in 1995. The primary objective of the BSBMTCT Registry was to define the role and monitor the outcome of treating patients within the UK and Ireland by any technique involving the use of allogeneic or autologous haemopoietic stem cells. In the last decade not only has the number of transplants reported to the Registry increased by more than 50% but there has also been a very substantial increase in the complexity of the data requested by national and international transplant bodies and Commissioning Authorities.

Prompt reporting of transplant data to the European Group for Blood and Marrow Transplantation (EBMT) is now a core requirement for successful accreditation with JACIE (an IOG requirement for all transplant centres). Increasingly it has been recognized by Commissioning Authorities that such data is also required if SCT is to be commissioned on a rational basis.

Functions of the BSBMTCT Registry Office

The BSBMTCT Registry Office currently has a number of core functions:

• The collection and co-ordination of data submission on all transplants performed by the 50 BSBMTCT member Centres in the UK and Republic of Ireland.
• Responsibility for checking the quality of the data sent to the Registry office and requesting missing values and data clarification as necessary
• Responsibility for the provision of training, and ongoing support, for all staff fulfilling a data management role in the BSBMT Transplant Centres, including clinical and database aspects of their role. This entails being available at all times to answer any clinical or data management queries they may have as well as helping with any problems that arise with the database. The BSBMTCT Registry provides a ‘one to one’ training service for those using the database and involves travelling to any of the BSBMTCT Transplant Centres as required.
• Acting as the interface between the European Group for Blood and Marrow Transplantation (EBMT) Central Office and all U.K Transplant Centres on any data issue
• Responsibility for ensuring Annual Follow Up data on patients are submitted to the Registry
• Responsibility for taking the necessary measures to ensure that missing data from all U.K Transplant Centres is submitted as appropriate
• Responsibility for submission of data on all transplants performed within the U.K to the EBMT
• Comparison of the annual EBMT Gratwohl Transplant Activity Survey against actual transplant registrations received by the BSBMTCT Registry
• Collation of transplant outcome data for U.K benchmarking exercise
• Acting as the interface between the EBMT Working Parties/Registries and U.K Transplant Centres on all data issues
• Responsible for data entry of all transplants registered from Centres who do not use the Project Management Internet Server, ProMISe, data entry system
• Supporting the activities of the BSBMTCT Clinical Trials Sub Committee
• Preparing data as requested for BSBMTCT members and outside professional bodies where appropriate.