The PID Odyssey 2030: outlooks, unmet needs, hurdles, and opportunities
The IPOPI Global Multi-Stakeholders’ Summit in 2022 marked a pivotal moment for the Primary Immunodeficiency (PID) community, fostering forward-thinking discussions among stakeholders to shape the future priorities of PID care. In this article, we’re excited to share the comprehensive recommendations that emerged from this groundbreaking summit.
From newborn screening to curative therapies
During the summit, various topics were discussed, including:
- Diagnosis: This covered areas like newborn screening, genomic sequencing (including ethical considerations of genomics on newborn screening), and the impact of accurate diagnostics on personalised management.
- Treatment: This section explored the evolution of immunoglobulin therapies on a global scale, novel treatments like targeted therapies, and innovative approaches to curative therapies.
- Disease crossovers: The interactions between Primary Immunodeficiencies (PID) and Secondary Immunodeficiencies, as well as Autoinflammatory Diseases and other evolving conditions in the field, were explored.
- Research Avenues: The summit also delved into research possibilities in humanities and human sciences, including Patient-Reported Outcome Measures (PROMs), Patient-Reported Experience Measures (PREMs), and Health-Related Quality of Life (HRQoL).
Experts, physicians, scientists, patients, and representatives from across the globe came together during the summit to discuss the environment for PID patients in the upcoming decade. Through this collaborative effort, we aim to pave the way for improved PID diagnosis and care, by building upon the shared understanding of challenges, opportunities, and scenarios discussed during the summit.
Read the full article here.
