For nearly 150 years, blood transfusions have been a lifeline for patients. Now, the “Registry Study for Blood Donor & Recipient Long-Term Outcomes” (LOS) aims to determine their long-term effects by enabling physicians and patients to collect granular data in a sophisticated digital platform – the LOS Registry.
Current practice does not capture the long-term prevalence and risk factors of transfusion reactions, with yearly estimates of potentially 200,000 European patients developing alloantibodies against transfused erythrocytes and 15,000 experiencing leukocyte antigen alloimmunity. Given the young donor demographic, it is also paramount to study the consequences of regular blood donations. LOS will empower scientists and medical professionals to shape tailored transfusion practices that consider the patient’s entire lifespan and individual risk factors.
The LOS study empowers patients by integrating them into transfusion medicine and research. LOS participants will receive expert-curated information on transfusion medicine and the study to enhance their knowledge and participation. At the heart of the LOS, the LOS Registry serves as a digital data hub, placing patients at the core of transfusion medicine and fostering an ecosystem of stakeholders focused on patient-centered care. Collaboration with patient organisations, medical professionals, scientists, and health policymakers is vital for our forward-looking approach.
We invite >physicians, hospitals and health ministries to participate in the LOS Transfusion Registry, a groundbreaking initiative dedicated to understanding the long-term effects of blood transfusion. By participating, you will contribute to a comprehensive, multi-centre study aimed at >improving patient outcomes and advancing transfusion practice.
Optimise patient care by contributing to research that tracks patient health over 30 years and provides important insights for better clinical practices. Collaborate with a multidisciplinary team of leading researchers, physicians, and data scientists to shape future policies and interventions based on reliable, >long-term data.
If you would like to join us, simply contact us and we will provide you with all the necessary details, including a comprehensive study plan and a section on statistical methods for applications to ethics committees and authorities, if required. We offer thorough training in our software as well as patient consent forms, contracts, information leaflets and ongoing support. After joining, your clinic will participate in benchmarking and receive anonymised reports on the outcomes of your own patients in national and international comparisons. You will also have access to registry data in accordance with GDPR, become part of our General Assembly and be able to contribute to the development of our science as an elected member of the LOS Scientific Board. We promote >innovative data science approaches and are looking forward to numerous collaborative publications.
Together we can revolutionise transfusion medicine, promote public health and participation, and enhance the preparedness to health crises. Support us in this important endeavour and become part of a transformative project that prioritises scientific excellence and patient well-being.
SURGEON
As a physician, I am excited about the LOS Transfusion Registry. It offers an unprecedented opportunity to understand the long-term impacts of blood transfusions on patient health. Such data is invaluable for improving transfusion practices and ultimately enhancing patient care and quality of life.
PATIENT
I recently learned about the LOS Transfusion Registry, and I'm genuinely impressed by its goals. Knowing that such a project is in place makes me hopeful for advancements that will benefit many patients like me in the future.
DATA SCIENTIST
The LOS Transfusion Registry data will offer a significant advancement in our ability to analyse long-term health outcomes. The comprehensive and standardized data collection will allow us to uncover critical insights and improve transfusion practices.
Get latest updates on the LOS Registry Study and advancements in transfusion medicine
The latest news, articles, and resources on transfusion medicine – follow our deputy study director, Dr Jan Kloka, on LinkedIn.
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