NHPCC Resource Repository
Assessing gaps in care and resources to support care.
Assessing gaps in patient care and staff resources to support care is the first step to making the best care even better. Learn more about the findings of the NHPCC’s needs assessments and surveys.
- National Patient Needs Assessment Announcement
- HTC Technical Needs Assessment Survey Results
- HTC Services Provided Survey Results
- Minority Needs Assessment Results
- Genetic Counselor Survey Results
- Patient Experience Survey (English)
- English Instructions for Survey
- Patient Experience Survey (Spanish)
- Spanish Instructions for Survey
- HTC Instructions for Administering Survey
Supporting initiatives for quality improvement.
The NHPCC is coordinating and supporting a national quality improvement (QI) effort to ensure that the science of quality improvement further improves care and outcomes for individuals with bleeding disorders.
- TRANSIT™: An Interactive Website to Support the Acquisition of Self-Management Skills Among Children with Hemophilia
- Journey to Best Outcomes in Hemophilia Transition: Enhancing Quality on the Pathway to Independence
- A Team Quality Improvement Initiative for Improving Transition from Pediatric to Adult Care: Building an Infrastructure
- Building Transitioning Through Communication: A Unique Experience at Gulf States Hemophilia and Thrombophilia Center
- Implementation of a Transition Focused Quality Improvement Program to Increase Self-Advocacy in Patients with Bleeding Disorders
- Transition to Adult Care in Hemophilia: Breaking Down Barriers for Patients and Staff
- Transitioning Patients with Hemophilia from Pediatric to Adult Care: A Quality Improvement Initiative
- Increasing Quality Improvement Capability for a Hemophilia Treatment Center: Rady Children's Hospital San Diego
- CIBD’s Transition Journey: (Don’t Stop Believin') In Ordering Factor
- Adolescent Transition Quality Improvement Collaborative: The Yale HTC Experience
- Factoring It In: Increasing the Number of Patients Who Order Their Own Factor Between the Ages of 17-22
- NHPCC Newsletters on the National Transition QI Collaborative