PFDD meeting for eczema still making huge impact

Articles

By Kathryn Jones

Published On: Sep 21, 2020

Last Updated On: Sep 30, 2020

It’s been one year since NEA, in collaboration with four peer patient advocacy organizations, hosted the landmark patient-focused drug development (PFDD) meeting dedicated to eczema.

The FDA’s PFDD process is an important means for the regulatory agency to better understand the patient perspective on current treatments and treatment gaps for specific diseases.

On Sept. 23, 2019, in Washington, D.C., people living with eczema and those who care for them shared their real-life accounts of this chronic disease with those who research, develop and regulate treatments. 

Since then, the “More Than Skin Deep-eczema” telecast, which can be found on YouTube, has been viewed almost 5,000 times.

Likewise, the “More Than Skin Deep-eczema” Voice of the Patient report was distributed widely after the event and will serve as a lasting reference across the regulatory, life science, research, healthcare professional and patient advocacy industries. 

And we continue to build from this monumental day. 

The survey that complemented the live event had more than 1,500 responses, making the “More Than Skin Deep-eczema” survey dataset one of the largest ever collected on the lived experience of atopic dermatitis patients and caregivers, demonstrating how individual voices can be combined into the power of many.

The five host organizations have teamed up with world-renowned dermatitis researchers to further explore the myriad of pediatric and adult experiences. 

We have also been inspired to launch initiatives and programs focused on expanding the eczema community’s expert platform by increasing the visibility and amplifying the voices of atopic dermatitis patients and caregivers.

One example is the new NEA Ambassadors program, which launched this summer and engages our community in meaningful efforts around research, advocacy and community outreach.

And building on findings from the “More Than Skin Deep-eczema” survey, we also conducted additional research to address the gap in knowledge about the eczema community’s understanding of and willingness to participate in clinical trials. We are eager to dive deeper into the survey findings to better understand motivation and resolve barriers as we move further into the new era of eczema drug development. 

On this one-year anniversary, we are spurred on by the energy of the “More Than Skin Deep-eczema” meeting. The momentum of the day will ripple for years to come as we continue to seek, share and strengthen the value of the lived experiences and expertise of the eczema community. 

For more information, visit Morethanskindeep-eczema.org