Hereditary angioedema (HAE) is a rare autosomal dominant disorder, characterized by recurrent, unpredictable and painful swelling episodes that might become life-threatening in case of oropharyngeal involvement.
Hereditary angioedema (HAE) is a rare autosomal dominant disorder, characterized by recurrent, unpredictable and painful swelling episodes that might become life-threatening in case of oropharyngeal involvement.
New prophylactic treatments for C1-INH HAE were expected to become available on the Belgian market. One of these products is the anti-kallikrein monoclonal antibody lanadelumab (Takhzyro®). In the context of the launch of this new innovative treatment for HAE, Hict supported Takeda to gain better insights in the clinical practice of HAE in Belgium and to investigate the impact of the disease on patientsʼ lives. Hence, the first aim of this project was to perform an expert opinion analysis.
Meanwhile, there was an ongoing patient registry initiative for HAE in Belgium, led by prof. dr. Ebo and his team. Additionally, the international guideline for managing HAE was recently revised and updated (Maurer et al., 2022).
Hence, a second aim of this project was to compare all available sources (the Belgian patient registry, the Belgian expert opinion analysis, and the updated guideline) and identify action points to further optimize the Belgian clinical practice in HAE. To reach this goal, Hict organized an expert panel and reported the findings in a white paper and one-pager.
During the intake phase, a kick-off meeting was held with Takeda to discuss context, general project approach and key outputs. Based on input from Takeda and additional desk research, a set of preliminary survey questions was already discussed.
A survey on the clinical practice on HAE was developed by Hict, aligned with the ongoing patient registry (led by prof. dr. Ebo and his team).
Together with Takeda, the Belgian clinical experts in HAE were identified. The survey was completed, and one-on-one interviews were conducted with 8 experts.
The results of the surveys and interviews were processed by Hict and delivered to Takeda in a slide deck and workshop.
The objective was to set up a Belgian expert panel, aiming to identify opportunities for optimised care, leading to specific action points for the Belgian clinical practice of HAE, based on a comparison of the 2021 HAE guidelines with available information on the current Belgian clinical practice (the Belgian patient registry and Belgian expert opinion analysis).
A detailed internal report, describing the presentations and discussions during the expert panel was developed.
A white paper was developed, focusing on the main opportunities to further optimize the Belgian clinical practice in HAE. Five main action points were identified, and several other suggestions were made. After feedback from Takeda was processed, the white paper was sent out to the participating experts to provide comments. The white paper was read and approved by all participating experts.
Lastly, a one-pager was developed by Hict providing a visual summary of the white paper, to capture the attention of HAE experts and other stakeholders.
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