Imperial College London
Portrait Picture

ProfessorAnnaRandi

Faculty of Medicine, National Heart & Lung Institute

Head of Section for Vascular Science
 
 
 
//

Contact

 

a.randi Website

 
 
//

Location

 

L-block, room 533Hammersmith HospitalHammersmith Campus

//

Summary

 

Publications

Citation

BibTex format

@article{Sidonio:2023:10.1080/17474086.2023.2171983,
author = {Sidonio, RF and Bryant, PC and Di, Paola J and Hale, S and Heiman, M and Horowitz, GS and Humphrey, C and Jaffray, J and Joyner, LC and Kasthuri, R and Konkle, BA and Kouides, PA and Montgomery, R and Neeves, K and Randi, AM and Scappe, N and Tarango, C and Tickle, K and Trapane, P and Wang, M and Waters, B and Flood, VH},
doi = {10.1080/17474086.2023.2171983},
journal = {Expert Review of Hematology},
pages = {39--54},
title = {Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities for mucocutaneous bleeding disorders},
url = {http://dx.doi.org/10.1080/17474086.2023.2171983},
volume = {16},
year = {2023}
}
Download

RIS format (EndNote, RefMan)

TY  - JOUR
AB  - BACKGROUND: Excessive or abnormal mucocutaneous bleeding (MCB) may impact all aspects of the physical and psychosocial wellbeing of those who live with it (PWMCB). The evidence base for the optimal diagnosis and management of disorders such as inherited platelet disorders, hereditary hemorrhagic telangiectasia (HHT), hypermobility spectrum disorders (HSD), Ehlers-Danlos syndromes (EDS), and von Willebrand disease (VWD) remains thin with enormous potential for targeted research. RESEARCH DESIGN AND METHODS: National Hemophilia Foundation and American Thrombosis and Hemostasis Network initiated the development of a National Research Blueprint for Inherited Bleeding Disorders with extensive all-stakeholder consultations to identify the priorities of people with inherited bleeding disorders and those who care for them. They recruited multidisciplinary expert working groups (WG) to distill community-identified priorities into concrete research questions and score their feasibility, impact, and risk. RESULTS: WG2 detailed 38 high priority research questions concerning the biology of MCB, VWD, inherited qualitative platelet function defects, HDS/EDS, HHT, bleeding disorder of unknown cause, novel therapeutics, and aging. CONCLUSIONS: Improving our understanding of the basic biology of MCB, large cohort longitudinal natural history studies, collaboration, and creative approaches to novel therapeutics will be important in maximizing the benefit of future research for the entire MCB community.
AU  - Sidonio,RF
AU  - Bryant,PC
AU  - Di,Paola J
AU  - Hale,S
AU  - Heiman,M
AU  - Horowitz,GS
AU  - Humphrey,C
AU  - Jaffray,J
AU  - Joyner,LC
AU  - Kasthuri,R
AU  - Konkle,BA
AU  - Kouides,PA
AU  - Montgomery,R
AU  - Neeves,K
AU  - Randi,AM
AU  - Scappe,N
AU  - Tarango,C
AU  - Tickle,K
AU  - Trapane,P
AU  - Wang,M
AU  - Waters,B
AU  - Flood,VH
DO  - 10.1080/17474086.2023.2171983
EP  - 54
PY  - 2023///
SN  - 1747-4086
SP  - 39
TI  - Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities for mucocutaneous bleeding disorders
T2  - Expert Review of Hematology
UR  - http://dx.doi.org/10.1080/17474086.2023.2171983
UR  - https://www.ncbi.nlm.nih.gov/pubmed/36920856
UR  - https://www.tandfonline.com/doi/full/10.1080/17474086.2023.2171983
UR  - http://hdl.handle.net/10044/1/103712
VL  - 16
ER  -
Download