We’re making progress to improve access and quality of care

Since it began in 2012, the NHPCC has continued to build upon our collaborations with the regional hemophilia networks to align strategic efforts and improve access and quality of care for people with hemophilia and related bleeding disorders. The NHPCC leverages the ATHN Systems infrastructure to support a variety of initiatives that are making a positive impact.

Here is a sampling of what we’ve accomplished. To access the full range of materials produced by the NHPCC, regional hemophilia networks, and other collaborating partners, visit the NHPCC Reference Hub.

Quality Improvement Action Guide

Transition of Care for Hemophilia Patients

Transition of Care for Hemophilia Patients

Healthy People 2020 Measures

Healthy People 2030 Measures

The Healthy People 2030 measure aims to reduce the proportion of people with severe hemophilia who have more than 4 joint bleeds each year. Learn more about BDBS-01.

340B Drug Pricing Program

90% reported it was important to receive care at a federally funded HTC, 97% reported HTC staff spend enough time and listen carefully, 93% reported HTC core services (hematology, nursing, social work, and physical therapy) met their needs well or very well

National Patient Needs Assessment

HTC Technical Needs Assessment

55% counseled patients outside the HTC network, 77% reported patients were referred by obstetricians/gynecologists, 40% did not know their nearest HTC, 19% were somewhat or very uncomfortable counseling a patient with a blood disorder

Genetic Counselor Survey