On the path to a cure

| Melissa Leavitt

The theme “Driving Discovery, Creating Community” encapsulates the many ways NPF strives to improve the lives of everyone affected by psoriasis and psoriatic arthritis. Scientific discoveries pave the path toward revolutionary treatments, while NPF’s outreach and education deepen connections throughout the psoriatic disease community.

But consider, for a moment, if “discovery” and “community” weren’t separated by a comma. NPF’s first 50 years of research hinged upon the growing visibility and voice of people living with psoriatic disease. The story of research at NPF is one of driving discovery through creating community — a community where scientists, health care providers and people with psoriatic disease stride together toward a cure.

NPF’s inaugural scientific meeting

The notion that psoriasis is “more than skin deep” shouldn’t make news anymore. But it wasn’t until the 1970s and 1980s that scientists identified psoriasis as a disease driven by the immune system. Recognizing that psoriatic disease research was at a watershed moment — and aware that further progress would require an active and engaged community of scientists joining forces to study the disease — NPF held its first multidisciplinary scientific meeting in 1989. Dermatologists joined experts in immunology, genetics and other fields in a workshop that explored untapped areas of psoriatic disease research.

The meeting came two years after the launch of NPF’s grants program, which since the beginning has fostered a robust psoriatic disease research community. When the first grant was awarded in 1987, it established NPF as a driving force in accelerating the leading-edge science that has come to characterize the field. The past few decades have seen a dramatic increase in capacity and diversification of NPF’s research program, which to date has awarded more than $15 million in funding.

Landmark research funded by NPF

It’s no coincidence that the development of NPF’s grants program paralleled a surge of pivotal studies directly impacting the lives of people with psoriasis and psoriatic arthritis. NPF’s early researchers led some of the most consequential investigations in the field, identifying, for example, specific components of the immune system that drive inflammation in psoriasis — discoveries that would lead to the development of highly effective, targeted therapies known as biologics.

The treatment revolution occurred alongside growing recognition of connections between psoriatic disease and other related health conditions, known as comorbidities. NPF support helped identify comorbidities such as cardiovascular disease by funding studies that tracked inflammation’s reach from the skin and joints throughout the body.

Underpinning these and other research topics is one simple question — what causes psoriatic disease? Understanding the role played by genetics has been an NPF priority since the 1989 workshop. NPF’s National Psoriasis Victor Henschel Biobank, which contains about 3,000 genetic samples, is one of the largest collections of psoriatic disease DNA in the United States today. The BioBank has become a fruitful resource for many in the psoriatic disease research community, offering clues that help explain who gets psoriasis or psoriatic arthritis and why.

But the BioBank is notable for another reason, too. It wouldn’t exist without the community of people with psoriasis and psoriatic arthritis who have teamed up with NPF to drive research efforts.

Forecasting the next 50 years

In recent years, NPF has pioneered new opportunities — such as Citizen Pscientist, our online patient-driven research network — for the psoriatic disease community to join the process of discovery. By anonymously contributing their data, Citizen Pscientists can increase our knowledge and spark new ideas for researchers to pursue.

The latest is NPF’s Psoriatic Disease Research Ambassadors program, funded through the Eugene Washington PCORI Engagement Awards program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI). The program aims to empower people with psoriasis and psoriatic arthritis to delve deeper into scientific research, go behind the scenes with scientists in the lab and mobilize others in the psoriatic disease community to become more engaged in research.

The Research Ambassadors program will kick off at the 2017 Research Symposium, held in conjunction with the National Volunteer Conference. It’s a fitting introduction for NPF’s newest effort to elevate the voices of people with psoriasis and psoriatic arthritis in the research community.

Ensuring that people with psoriatic disease are the stakeholders and decision-makers driving scientific inquiry has been at the top of NPF’s agenda since its inception. Just like that first research summit in 1989, August’s Symposium will set priorities and chart the future course of NPF’s research programs. But it’s the involvement of the entire psoriatic disease community — scientists, providers and people with psoriasis and psoriatic arthritis alike — that will truly set the stage for the next 50 years of partnering in discovery.

The opinions expressed by NPF Blog contributors are their own and do not reflect the opinions or positions of the National Psoriasis Foundation. The information posted on the NPF Blog is not intended as, and is not, a substitute for professional medical advice.


Driving Discovery, Creating Community

This year, we’re celebrating 50 years of driving efforts to cure psoriatic disease and improve the lives of those affected. See how far we’ve come with this timeline of NPF’s history. But there’s still plenty to do, and we can’t do it without you! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funding to promote research into better treatments and a cure by joining Team NPF, where you can walk, run, cycle, play bingo or even create your own DIY event. Contact our Patient Navigation Center for free, personalized support for living a healthier life with psoriatic disease. And keep the National Psoriasis Foundation going strong by making a donation today! Together, we will find a cure.

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