Publication of PIDs -Principles of Care
Over the last two years, IPOPI combined its efforts with a worldwide multi-disciplinary team of specialists to develop the “Primary Immunodeficiencies Principles of Care”. The paper outlines the key necessary elements and policies that should be in place to provide a “gold standard” framework of diagnosis and care for primary immunodeficiencies.
IPOPI is delighted to announce that the PIDs principles of care were published in Frontiers in Immunology on December 15th, 2014.
The publication aims at providing guidance to decision-makers and healthcare professionals throughout the world on the different aspects affecting PIDs. The PIDs Principles of Care cover the following aspects: the role of specialised centres, importance of registries, the need for international collaborations for scientific research, the role of patients groups, management and treatment options for PIDs, and management of PID diagnosis and care throughout the world.
The document is the result of the effort of the PIDs Principles of Care Working Party led by IPOPI, which brought together IPOPI representatives and 28 medical experts representing the 5 continents and different areas of work related to PIDs. IPOPI would like to express its most sincere thanks to all the co-authors of the PIDs Principles of Care with special thanks to Professor Helen Chapel, IPOPI’s Honorary Vice President, whose coordination and input were pivotal in getting the document published.
We invite all our NMOs and other PID stakeholders to use the PIDs Principles of Care to promote better access to early diagnosis and care for PID patients worldwide.
IPOPI 5th PID Forum at the European Parliament
IPOPI held yesterday its 5th PID Forum at the European Parliament in Brussels (Belgium), which was co-chaired by Dr Cristian Busoi MEP and Dr Boreslaw Piecha MEP. This edition focused on the need for a comprehensive framework for care and policy for PIDs.
Patient organisations, stakeholder groups, European and international organisations and industry representatives gathered with Members of the European Parliament to discuss how to involve PID patients in the development of policies that would have an impact on their lives: from SCID newborn screening, to the Blood Directive, European Reference Networks and Health Technology Assessments (HTAs).
More information on the Forum and the presentations very soon in the IPOPI Winter e-News!
Recommendations for anti-infectious prophylaxis
Because infectious diseases are a major source of morbidity and mortality in the majority of patients with primary immunodeficiencies (PIDs), the application of a prophylactic regimen is often necessary. However, given the variety of PIDs and pathogens involved, and because evidence is scarce, practices are heterogeneous. To homogenize practices, the French National Reference Centre for PIDs (CEREDIH) has elaborated recommendations for anti-infectious prophylaxis for the most common PIDs. These recommendations were the subject of an article “Prevention of Infections during Primary Immunodeficiencies” which can be accessed here.
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