European Transplant and Cellular Therapy Online Registry

ongoing

The EBMT Registry, established in 1974, is the backbone of the EBMT’s research and educational activities, providing a pool of data to stakeholders to perform studies, assess epidemiological trends, and ultimately improve patients’ lives. The Registry is one of the most relevant in the field of the Substances of Human Origin in Europe, containing the clinical data over half a million patients, including aspects of the diagnosis and disease, first-line treatments, haematopoietic stem cell transplantation (HSCT) or cell-therapy-associated procedures, transplant type, donor type, stem cell source, complications and outcome. The constant evolution of HSCT and cellular therapies requires the continuous development and improvement of information technology (IT) tools and features, as a prerequisite to adjust to new and innovative treatments and associated legal and technical requirements. In order to answer the current and future needs of the HSC stakeholders –Professionals and Competent Authorities (CA) – the EBMT Registry requires a significant update of its structure and features. The proposed development will enable the correct monitoring of HSCT activities, oversight of patient and donor safety and recording/collecting quality, safety and efficacy data. A new EBMT registry will be built based on the needs identified by HSCT professionals and CA, and aims to be as flexible as possible, allowing its customization at regional/federal levels, in order to serve and adapt to different realities, in a user-friendly manner. The future platform aims to provide an effective answer to the requirements of clinicians/professionals involved in HSCT and Cellular Therapies on one hand and other stakeholders such as CA or other health authorities on the other while complying with best practices associated with standardization and data protection (General Data Protection Regulation - GDPR), ultimately enabling better health decisions leading to improved, outcomes and care for EU