To dramatically improve quality of life for children living with eczema by advancing research that fills critical knowledge gaps from the patient and family perspective.
Global Parents for Eczema Research (GPER) is an international coalition of parents of children with eczema comprised of and led by parents. GPER formed in 2015 to address the critical need for research that answers questions of importance to children and families, and was selected by the Patient-Centered Outcomes Research Institute (PCORI) for a three-year award to pursue that purpose.
GPER is uniquely focused on bringing the patient and family perspective to the research and innovation process and policy discussions – and on sharing critical research that pertains to the treatment and management of eczema with families.
GPER engages in four strategic areas:
In 2019, a team of GPER parent members and researchers conducted a survey that assessed burden and unmet needs among children with moderate to severe atopic dermatitis and their families. The results have been translated into an animated video and shared via a social media campaign. Please visit www. parentsforeczemaresearch.org and share with your networks, too. Findings will also be published in a peer-reviewed journal.
The full “Burden of Eczema on Children and Families” video can viewed at www.parentsforeczemaresearch.org
Recognizing a gap in knowledge related to prevalence of and reasons for medication non-adherence among parents of children with eczema, GPER initiated a study in 2018 to examine these issues. That work was recently published in the journal Pediatric Dermatology. Capozza, K, Schwartz, A. Does it work and is it safe? Parents’ perspectives on adherence to medication for atopic dermatitis. Pediatr Dermatol. 2019; 00: 1– 4. https://doi.org/10.1111/pde.13991
Global Parents for Eczema Research www.parentsforeczemaresearch.com firstname.lastname@example.org
Facebook: @groups/globalparents Twitter: @eczemaresearch