Building the blueprint: Formulating a community-generated national plan for future research in inherited bleeding disorders.

ABSTRACT:

Introduction

Decades of inherited bleeding disorders (BD) research transformed severe haemophilia from a childhood killer to a disorder managed across a full lifespan for many in economically developed countries. Health equity, a life unimpaired by disease complications, however, remains unimaginable for most people with an inherited BD (PWIBD).

Aim

The National Hemophilia Foundation (NHF) and American Thrombosis and Hemostasis Network (ATHN) undertook the development of a community-driven United States (US) National Blueprint for Inherited Bleeding Disorders Research to transform the experience of all PWIBD and those who care for them.

Methods

Extensive community consultations were conducted to identify the issues most important to PWIBD and those who love and care f

SUBMITTER: Valentino LA 

PROVIDER: S-EPMC9546016 | biostudies-literature | 2022 Sep

REPOSITORIES: biostudies-literature