Background
The EBMT maintains a Registry of clinical data from patients undergoing haematopoietic stem cell transplants (HSCT). The Registry has data from the early 70’s until today and is the single biggest data source of its kind in Europe. The Registry holds today over 340,000 transplant registrations receiving approximately 25,000 new registrations each year. The data is provided by approximately 500 centres, from about 50 countries, some of them outside Europe. Most of the data (70%) is entered by centres, with the rest being entered by national registries and the EBMT Registry Office. Hardware consists of the EBMT server and the software is the internet project manager, ProMISe, and SQL server.
The Registry provides free use of the infrastructure to all centres that provide data and, on request, can also provide the infrastructure to study groups led by EBMT members.
Upgrading the system is essential to maintain and increase the level of science through our EBTM Studies, as well as collaboration with other institutions. The EBMT Registry represents a key tool for the scientific research and regulatory activities of the Society and its partners. A major strand of the EBMT strategic plan is to update the Registry System with state-of-the-art software designed to meet future data collection and retrieval needs. By creating a consortium of partners including national and donor registries, ascertaining needs and what each party can contribute, the goal is to share resources and create a system of maximum utility. The overall aim is to significantly improve the research infrastructure in Europe whilst promoting standardised data collection and international harmonisation.
The process was initiated in 2009. Since then a series of meetings with stakeholders have been taking place to disseminate the project and request feedback. A document listing essential requirements has been drafted with the participation of the main stakeholders (Hospitals, Data Managers, Study Coordinator, Scientists, National Registries, Donor Registries and others). Today the Registry holds an initial completed draft of these requirements.
Funding will be sought from as many sources as possible. Willing partners can be part of the funding applications or may seek independent funding.
Aim of the project
The upgrade of the Registry system focuses on four general aims:
DATA QUALITY =Increase the scope and quality of the data available for research, facilitating future implementations
EFFICIENCY = Improve efficiency of data collection with an increase in data entry to be done by the centres, a reduction in training needs, reduction in the volume and complexity of the documentation, sharing of implementation overheads
FRIENDLINESS = facilitate the work of the EBMT members by providing them with a tool with which data entry and data reporting are user friendly, providing intuitive data entry screens, faster response time, facilitating data review, with a simpler access to documented reports. It aims to also decrease the data reporting burden by increasing number of integrated collaborators (data end users or superusers) so that centres only have to report data once
ENHANCEMENT OF COLLABORATION = widen the use of the data by co-opting organisations with which we share the same objectives and with which the EBMT wants to collaborate, providing them with a tool that meets their needs; widen the scope of research projects (combined donor and patient projects, for example); use of biological samples; etc.
Main Responsibilities
The Project Coordinator will report to the Executive Director. The main responsibilities, in coordination with the Registry Head, are to:
Based on the existing documentation, elaborate a Project Proposal of the Registry Upgrade with a clear Technical Solution, Budget and Implementation Plan.
Coordinate the Registry Upgrade Working Group
Participate in the Fundraising Strategy
Tasks
The project manager’s remit will be to:
Prepare and appropriately format the necessary written documentation to be presented as a Final proposal to the EBMT Board and used to introduce the project to system/software providers
Research technical groups / individuals / companies that may be interested in developing the project and initiate contacts with a selected few
Set up and participate in meetings or demonstrations between the Registry manager, stakeholder representatives and the interested technical parties
Prepare and coordinate the tendering process
Set up and maintain a feedback loop with the Registry Upgrade Working Group
Disseminate information to the Registry stakeholders in the most appropriate way, including meetings, remote conferences and documents
Depending on the successful approval of the project by the EBMT Board, the project manager may also be asked to:
Support the search for groups / individuals / foundations that may be interested in financing the project to assess suitability for funding applications
Support the writing and submission of funding applications
Coordinate the implementation of the Registry Upgrade project
The project manager will work closely with the Registry Head, the Financial Controller and the Executive committee.
Salary is negotiable and will be determined according to the country of residence and experience of the applicant.
Contacts
Interested parties should apply with their CV and a cover letter stating why they believe they are suitable for this job and why they are interested in it.
For an informal chat, please contact Andreu Gusi at andreu.gusi@ebmt.org, who will provide you with a time slot during which he is free to take the phone call.
The European Group for Blood and Marrow Transplantation (EBMT) is a non-profit organisation that was established in 1974 in order to allow scientists and physicians involved in clinical bone marrow transplantation to share their experience and develop co-operative studies. The EBMT is devoted to the promotion of all aspects associated with the transplantation of haematopoietic stem cells from all donor sources and donor types including basic and clinical research, education, standardisation, quality control, and accreditation for transplant procedures.