This IPOPI led workshop brings together experts and KOL’s in the field of WHIM, to discuss the value that an international WHIM Syndrome Data Harmonisation Platform could bring for WHIM patients living around the world.* Participation in the workshop is by invitation only.
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* The rationale behind this initiative is to launch an innovative AI-based global platform to follow the natural history of the disease. Key elements to study are the burden of disease, phenotypic correlations with genetic mutations, understanding of global and regional trends in WHIM diagnosis, progression and treatment; risk of malignancy and other long-term sequelae with the goal to improve the understanding of the disease through publications and scientific presentations. The project would importantly also seek to gain a better understanding of treatments used for WHIM, clinical outcomes, impact on quality of life, the burden of treatment and overall impact on healthcare resource utilization.
This workshop is sponsored by X4 Pharmaceuticals.