Project Description

PMD Foundation Exceeds Natural History Study Enrollment By 100%

THE PMD FOUNDATION SERVES THOSE AFFECTED BY PELIZAEUS-MERZBACHER DISEASE

Case Study

The PMD Foundation (PMDF) came to 29 Design Studio to have the agency promote their partnership with the Children’s Hospital of Philadelphia (CHOP) and five other international medical institutions when they launched a joint initiative to collect robust Natural History Data on individuals with Pelizaeus-Merzbacher Disease (PMD) in August 2019.

  • Integrated Marketing

  • Social Media

  • Web Design

PMD Foundation

About The Client

The PMD Foundation serves those affected by Pelizaeus-Merzbacher Disease (the PMD community) by supporting programs of education, research, service, and advocacy. PMD is an ultra-rare X-linked genetic disorder that affects 1 in 500,000 males in the United States.

The Challenge

Faced with an urgent need to collect Natural History data from PMD patients, the Foundation was looking to leverage upcoming therapies for PMD. This information would also be essential to leverage any future clinical trials that could be approved by the FDA. Researchers need to understand the natural history of PMD (how it progresses over time) before they can design clinical trials that test whether these therapies are safe and effective for use in the patient population.

The Study would be considered a success if CHOP was able to obtain a history for 95 cases on behalf of the global medical institutions. While medical studies are notoriously lengthy and cumbersome to participate in, the opposite held true in this case. The Foundation had to make their community aware of the speed and simplicity that came with enrollment in the Study.

PMD Natural History Study

Solution

29 Design Studio created an integrated marketing campaign in which the target audience received consistent, persuasive, and reinforced brand messaging through a variety of mediums. It was crucial to highlight the benefits of the study while connecting with the audience on an emotional level.

Patients and families participating in this study did not need to travel or undergo any type of clinical exam in order to enroll. They simply had to request that their medical records be sent to the study coordinators.

This was the largest moment in the entire history of research on this disease. In preparation for the launch of the campaign announcing the Study, 29 Design Studio redesigned the entire PMD Foundation website. By creating a clear user journey for families to take to participate, and including short and simple videos from board members and medical professionals emphasizing the simplicity of the enrollment, we humanized the campaign.

Testimonial

“This enrollment is HUGE for the PMD community. Maureen and her team put a great strategy in place for The PMD Foundation to efficiently and effectively get the word out about The PMD Natural History Study. Thanks to her guidance, we have seen tremendous involvement from
PMD families.”

Dave Manley, Board Chair, The PMD Foundation

Results

This method of engaging members of the PMD community, as well as those in the field of medicine, with facts and personal stories, yielded impressive results. The videos went to reach just shy of 10,000, with over 800 targeted audience members watching beginning to end, at a cost of only $.06 per play. The groundbreaking news was also distributed via a press release garnering a potential reach of over 67 million worldwide.

30 families enrolled within the first five days, with 52 new families contacting coordinators once the video campaign was launched on social media. While the original study goal was to have 95 patients enrolled, stakeholders decided to double the goal thanks to the success seen in the early days of the campaign.

See the the PMD Foundation Natural History Study Video >

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