PlatformQ Health, the National Organization for Rare Disorders (NORD), the International Fibrodyslpasia Ossificans Progressiva Association (IFOPA), and the Rare Bone Disease Alliance produced an online CME program for healthcare providers as well as an online educational program for those living with or caring for those with fibrodysplasia ossificans progressiva (FOP).
Featuring a series of three activities (one for primary care providers, one for specialist’s, and one FAQ spotlight), six 30-minute educational modules, the sessions attracted 1,512 providers and 419 patients/caregivers. PlatformQ Health, NORD, and IFOPA presented a poster at Rare Disease Day at NIH 204 highlighting the program results.
Click here to download the full poster.
Pre- and post-assessments were performed to gauge program effectiveness. Across all learners, there were increased competencies in:
- Hallmark signs of FOP
- Peak ages of flares
- Flare treatment
However, for provider learners, there was a low baseline and low to average post-activity knowledge regarding FOP diagnosis, pathophysiology, and treatment guidelines, as well as low confidence in their ability to diagnose and manage FOP. For patients and caregivers, there was a low to average satisfaction level regarding their FOP care, and having to educate providers about the condition. There were confirmed instances of diagnostic delays and undergoing unnecessary traumatic procedures.
This data validates published findings regarding the deep involvement of parents and caregivers in leading care, as well as serious gaps in knowledge among providers. There is a pressing need for continuing education in both groups to shorten the diagnostic odyssey and ensure prompt initiation of treatments to alleviate suffering.