Today, on March 1, 2021, PlatformQ Health is proud to be presenting a poster at the Rare Disease Day at NIH 2021 Virtual Event, for the first time. Rare Disease Day at NIH aims to raise awareness about rare diseases, the people they affect, and highlights the recent research collaborations to address challenges and advances in new treatments. The event begins today at 10:30AM ET and is free and open to the public. 

The poster, “Educational Outcomes of Aligned Caregiver and HCP Online Education on Spinal Muscular Atrophy” shares the outcomes from an online educational initiative in Spinal Muscular Atrophy, that targeted both HCPs and caregivers. The tethered educational program, “Improving Outcomes in Spinal Muscular Atrophy: Best Practices for Clinicians and Families” was produced in collaboration with the National Organization for Rare Disorders, one of our long-term partners and CureSMA. 

The evaluation results from this program support existing evidence of the effectiveness of online CME and patient education, while specifically showing support for online education on SMA as a positive influence on caregivers, patients and clinicians. The strong impact of the program also highlights the value of collaboration among the initiative partners, NORD and CureSMA, who helped develop relevant educational content and promote the program to the audience most in need of education. 

Tethered education initiatives like this one are critical to help manage expectations, define evolving roles, and help clinicians and caregivers work together to attend to the changing needs of the child, or the person, with SMA. The positive changes in knowledge and competence from clinicians and caregivers, and the declarative changes from both clinicians and HCPs will be critical as they continue to adapt to the rapid changes and advances in medical science. 

PlatformQ Health is committed to taking a collaborative approach to helping people with rare diseases through relevant digital education that aims to improve quality of care and overall health outcomes. 

Have questions about the poster or want to learn more about how PlatformQ Health is delivering impactful education to HCPs and patients? Email us at