EBMT to upgrade patient registry with Elsevier’s MACRO platform

Elsevier, the information analytics company specialising in science and health, announced that The European Society for Blood and Marrow Transplantation (EBMT), a non-profit organisation established to fight life-threatening blood cancers and diseases, will implement Elsevier’s MACRO platform to support its vital and long-standing patient registry.

The EBMT identified a need to evolve its registry to ensure that it is fit for the current treatment and patient landscape, while also supporting the introduction of new treatment technologies, along with subsequent technical, legal and medical requirements.

Project 2020 registry

This registry update, named Project 2020, will result in a platform that is more intuitive and user-friendly, is truly collaborative and increases efficiency of data collection and retrieval, resulting in increased scope and quality of the data available.

"Our registry is the backbone of the EBMT and to guarantee its continued usefulness, we need to modernise it and thereby increase its functionality," said Per Ljungman, Chair, Registry Committee of EBMT.

"The registry currently holds data on more than 500,000 patients and almost 600,000 transplants, submitted by over 500 centres across 50 countries, and has a direct impact on clinical practice, leading to improvement in patient outcomes and quality of life."

"The introduction of new therapies is great news for patients and clinicians, but requires international, multi-centre collaboration. As a result, our registry is subject to increasing complexity. The implementation of MACRO supports our ambition to capture high-quality outcomes data that meets the needs of all stakeholders, including transplant centres, researchers, health authorities, donor registries and, most importantly, patients," Ljungman said.

Big data

Elsevier’s MACRO is a powerful, industry-standard electronic data capture solution that has been proven in commercial and not-for-profit clinical research since 1999. MACRO’s dynamic and easy to use tools for study definition, data capture and data management simplify set-up, reduce time to first data entry and to database lock, and help researchers succeed every time in increasingly complex clinical trials. MACRO is used by pharmaceutical companies, academic medical centres, CROs and medical device companies.

Carmen Ruiz de Elvira, Registry Head at EBMT, said, "Our organisation depends on being able to collate high-quality data from clinical trial sites across Europe. For that reason, we need a system that reduces the burden on our partners and is easy to use. Fundamentally, the easier it is for our partners to use the system, the better quality data we receive."

In-built data management

Oliver Cram, General Manager for MACRO at Elsevier, said, "We’re committed to working with EBMT on Project 2020. MACRO’s functionality will support the ambitions of the organisation to keep pace with developments in treatment technology, thereby improving the quality of life and outcomes for people affected by blood cancers and diseases."

Project 2020 is a priority for the continued success of EBMT. The flexibility of MACRO, along with its user-focused interface and in-built data management and quality control processes, ensures that the updated registry will continue to drive high-level research and education.