The Pulmonary Hypertension Association’s Scientific Leadership Council, 28 global leaders in the field of pulmonary hypertension, have spearheaded the PHA-Accredited PH Care Centers (PHCC) initiative to establish a program for accreditation of centers with special expertise in pulmonary hypertension (PH), particularly pulmonary arterial hypertension (PAH), to raise the overall quality of care and outcomes in patients with this life-threatening disease.
Why Accreditation is Needed
Once considered rapidly fatal, PAH can now be treated with many medications, all developed in just the past two decades. Despite medical advances, the median time from onset of symptoms to PAH diagnosis is still 1.1 years, and many patients will see three or more different physicians over this period before they are properly diagnosed. Since early 2011, PHA’s Scientific Leadership Council has been developing the PHCC initiative to assure outstanding care in pulmonary hypertension to address these concerns.
Plans for the PHCC Initiative
PHA expects the phase-in of accreditation of PH Care Centers to be implemented over the next three to four years. Two types of centers will be accredited: Centers of Comprehensive Care (CCC) and Regional Clinical Programs (RCP). Both accredited CCCs and RCPs will have demonstrated a commitment to providing expert-level care based on pulmonary hypertension consensus guidelines.
Pulmonary Hypertension Association Registry (PHAR)
Accredited PHCCs have the opportunity to enroll PH patients into the Pulmonary Hypertension Association Registry (PHAR). A patient registry is an organized system that collects data to evaluate certain outcomes for a population of people with a medical condition (like PH) and is a useful tool for learning more about rare diseases.
Raising the Level of Care
- Patients are better informed about comprehensive PH care
- Patients have improved access to Centers with expertise in PH
- Patients experience less time between symptom onset and diagnosis
- A medical community better informed about standards of PH care
- Therapeutic modalities are appropriately used to improve long-term outcomes
- Increased opportunities for collaboration between Centers for clinical care and PH research