Big picture initiatives in bleeding disorders
Document type :
Compte-rendu et recension critique d'ouvrage
DOI :
Permalink :
Title :
Big picture initiatives in bleeding disorders
Author(s) :
RAUCH, ANTOINE [Auteur]
Récepteurs Nucléaires, Maladies Métaboliques et Cardiovasculaires - U 1011 [RNMCD]
Valentino, Leonard [Auteur]
Mills, Kevin [Auteur]
Witkop, Michelle [Auteur]
Santaella, Maria [Auteur]
Dimichele, Donna [Auteur]
Recht, Michael [Auteur]
Susen, Sophie [Auteur]
Récepteurs Nucléaires, Maladies Métaboliques et Cardiovasculaires - U 1011 [RNMCD]
Récepteurs Nucléaires, Maladies Métaboliques et Cardiovasculaires - U 1011 [RNMCD]
Valentino, Leonard [Auteur]
Mills, Kevin [Auteur]
Witkop, Michelle [Auteur]
Santaella, Maria [Auteur]
Dimichele, Donna [Auteur]
Recht, Michael [Auteur]
Susen, Sophie [Auteur]
Récepteurs Nucléaires, Maladies Métaboliques et Cardiovasculaires - U 1011 [RNMCD]
Journal title :
Haemophilia
Pages :
53-60
Publisher :
Wiley
Publication date :
2022-05-06
ISSN :
1351-8216
English keyword(s) :
heavy menstrual bleeding inherited bleeding disorders postpartum haemorrhage pregnancy
heavy menstrual bleeding
inherited bleeding disorders
postpartum haemorrhage
pregnancy
heavy menstrual bleeding
inherited bleeding disorders
postpartum haemorrhage
pregnancy
HAL domain(s) :
Sciences du Vivant [q-bio]
English abstract : [en]
Abstract Introduction The inherited bleeding disorders (IBD) community has witnessed significant therapeutic advances recently, yet important gaps persist, particularly for those with rare disorders and historically ...
Show more >Abstract Introduction The inherited bleeding disorders (IBD) community has witnessed significant therapeutic advances recently, yet important gaps persist, particularly for those with rare disorders and historically underserved populations. Aims To create a national research blueprint agenda, led by the National Hemophilia Foundation (NHF), enhancing patient‐centric principles, accelerate research progress and address important gaps in care. To review critical gaps that remain to be addressed in women with IBDs, who face specific bleeding challenges. Methods The NHF research blueprint research agenda was defined by input from across the community, including caregivers and patients who are considered subject matter experts of their IBD, research leaders, allied health professionals and specialists, and representatives of the biopharmaceutical industry. In addition, two medical experts in the field of IBDs performed a comprehensive review to address the knowledge gaps in women with IBDs. Results Two foundational principles of the NHF blueprint are: (1) it must deliver on key issues that significantly impact the lives of those affected by IBDs, and (2) the priorities defined are relevant and actionable aimed to achieve health equity among all those affected by IBDs. A multidisciplinary approach is necessary for an optimal management of puberty, transition to adulthood and pregnancy. Even if strict guidelines are followed, recent studies show that women with IBDs are still facing a high burden. Conclusion NHF blueprint will be issued in 2022. A specific research agenda is needed in women with IBDs to further improve their management and quality of life.Show less >
Show more >Abstract Introduction The inherited bleeding disorders (IBD) community has witnessed significant therapeutic advances recently, yet important gaps persist, particularly for those with rare disorders and historically underserved populations. Aims To create a national research blueprint agenda, led by the National Hemophilia Foundation (NHF), enhancing patient‐centric principles, accelerate research progress and address important gaps in care. To review critical gaps that remain to be addressed in women with IBDs, who face specific bleeding challenges. Methods The NHF research blueprint research agenda was defined by input from across the community, including caregivers and patients who are considered subject matter experts of their IBD, research leaders, allied health professionals and specialists, and representatives of the biopharmaceutical industry. In addition, two medical experts in the field of IBDs performed a comprehensive review to address the knowledge gaps in women with IBDs. Results Two foundational principles of the NHF blueprint are: (1) it must deliver on key issues that significantly impact the lives of those affected by IBDs, and (2) the priorities defined are relevant and actionable aimed to achieve health equity among all those affected by IBDs. A multidisciplinary approach is necessary for an optimal management of puberty, transition to adulthood and pregnancy. Even if strict guidelines are followed, recent studies show that women with IBDs are still facing a high burden. Conclusion NHF blueprint will be issued in 2022. A specific research agenda is needed in women with IBDs to further improve their management and quality of life.Show less >
Language :
Anglais
Popular science :
Non
Source :
Submission date :
2024-01-09T03:38:14Z
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