Patient-Registry

Information analytics platform used to update EBMT patient registry

Information analytics company Elsevier has announced that The European Society for Blood and Marrow Transplantation (EBMT) will implement its MACRO platform to support it patient registry.

Elsevier’s MACRO platform consists of tools for study definition, data capture and data management and is used by researchers in clinical trials, pharmaceutical companies, academic medical centres, CROs and medical device companies.

The EBMT realised it needed to update its registry to fit the current treatment and patient landscape whilst also supporting the introduction of new treatment technologies and technical, legal and medical requirements.

The registry update, named Project 2020, will aim to incorporate a platform that is more intuitive and user-friendly and increases efficiency of data collection and retrieval, to results in increased scope and quality of the data available.

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

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.”

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.”



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