データ収集

私たち研究とデータ収集への取り組みは、WFH研究・データ収集プログラム(WFH Research and Data Collection Program)に集約されています。このプログラムには、年次グローバル調査(Annual Global Survey)、世界出血性疾患レジストリ(World Bleeding Disorders Registry)、遺伝子治療レジストリ(Gene Therapy Registry)、およびこれらに付随する教育や能力強化プログラムが含まれています。私たちの目的は、各国代表患者会(NMO)や血友病治療センター(HTC)が能力を高めるためのツール、出血性疾患患者のデータ収集の枠組み、ケア向上を目指す研究や権利擁護支援に活かす収集データの利用について、教育やトレーニングを提供することです。

年次グローバル調査

年次グローバル調査は、WFHの各国代表患者会(NMO)を対象とした年1回の横断的調査です。これには、血友病(PWH)、フォンウィルブランド病(VWD)、まれな凝固因子欠乏症、遺伝性血小板障害を持つ人々に関する国レベルの人口統計データや治療関連データが報告されています。

遺伝子治療レジストリ

Gene therapy is a new and evolving therapeutic modality for hemophilia. Clinical trials have established the efficacy of gene therapy in decreasing bleeding and use of hemostatic treatment for at least five to eight years post-infusion. However, many unresolved questions on the long-term safety, variability and durability of efficacy remain at the completion of initial clinical trial programs. Lifelong follow‐up of patients is crucial to monitor long-term safety and efficacy of gene therapy.

世界出血性疾患レジストリ(WBDR)

WBDRは、血友病患者(PWH)およびフォン・ヴィレブランド病(VWD)患者の標準化された臨床データを収集する唯一のグローバルレジストリです。このレジストリに参加している血友病治療センター(HTC)の大規模ネットワークにウェブベースのデータ入力プラットフォームを提供し、データの収集と管理を行っています。

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