Sèvi ak Rejis World Federation of Haemophilia Gene Therapy pou Suivi alontèm Pasyan Haemophilia Trete ak Gene Therapy
Pwen esansyèl Soti nan Kongrè Mondyal WFH 2022 la

Sèvi ak Rejis World Federation of Haemophilia Gene Therapy pou Suivi alontèm Pasyan Haemophilia Trete ak Gene Therapy

Prezante pa: Barbara A. Konkle, MD, University of Washington, Seattle, Washington, USA

Barbara A. Konkle1, Donna sèkèy2, Mayss Naccache2, Cary Clark3, Lindsey A. George4, Alfonso Iorio5, Wolfgang Miesbach6, Declan Noone7, Flora Peyvandi8, Steven Pipe9, Michael Recht10, Mak Skinner11, Leonard Valentino12, Johnny N. Mahlangu13, Glenn F. Pierce2

1University of Washington, Seattle, Etazini
2Federasyon Mondyal Emofili, Monreyal, Kanada
3Sosyete Entènasyonal sou tronboz ak emostaz, Carrboro, Etazini
4The Children's Hospital of Philadelphia, Philadelphia, Etazini
5Depatman Metòd Rechèch Sante, Prèv, ak Enpak, McMaster University, Hamilton, Kanada
6Klinik Medikal 2/Enstiti Medsin Transfizyon Inivèsite Lopital Frankfurt, Almay
7Ewopeyen Haemophilia Consortium, Bèljik
8Università degli Studi di Milano, Itali
9Depatman Pedyatri ak Patoloji, University of Michigan, Ann Arbor, Etazini
10American Thrombosis and Hemostasis Network, Rochester, Etazini
11Institutefor Policy Advancement Ltd., ak Depatman Rechèch Metòd, Prèv, ak Enpak, McMaster University, Washington, District of Columbia
12Fondasyon Nasyonal Emofili, New York, Etazini
13Inivèsite Witwatersrand, Lafrik di sid

Kle Done Pwen

WFH GTR Aplikasyon

Rejis terapi jèn WFH (GTR) se yon rejis potansyèl, obsèvasyon, ak longitudinal ak yon objektif jeneral nan kolekte done pou tout pasyan ki resevwa terapi jèn pou emofili, tou de nan esè klinik ak nan yon faz apre maketing si ak lè yo apwouve. Sa yo se objektif prensipal ak segondè nan rejis la.

Objektif WFH GTR

Pou kapab aplike GTR a, WFH ap rive jwenn sant tretman emofili endividyèl (HTCs), kòmanse ak moun ki enplike nan esè klinik terapi jèn emofili. Y ap mande rejis nasyonal emofili pou kontribiye tou. WFH ap travay tou ak endistri pou devlope yon pwosesis pou jwenn done ki sòti nan esè klinik yo fini.

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Sipòte pa sibvansyon edikasyon bay Bayer, BioMarin, CSL Behring, Freeline Therapeutics Limited, Pfizer Inc., Spark Therapeutics, ak uniQure, Inc.

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