Back in 2008, the National Psoriasis Foundation faced a simple choice: keep planning ahead one year at a time or start thinking bigger. NPF chose the latter. In 2009, we embarked on our first five-year strategic plan.
A strategic plan guides your organization in all its activities. Creating a plan compels you to choose your long-term goals, rank your priorities, and help everyone understand the steps you must take to get where you want to go.
It’s 10 years and two plans later, and because we’ve been thinking bigger we’ve accomplished bigger things:
- Developed the Treat to Target recommendations for treating psoriasis patients to the level of their disease severity
- Committed ourselves to the creation of a diagnostic test for psoriatic arthritis
- Collaborated with the American Academy of Dermatology on psoriasis treatment guidelines, the first update in a decade
- Collaborated with the American College of Rheumatology on psoriatic arthritis guidelines, which have the potential to transform the standard of care
- Raised approximately $20 million to fund research and research-related activities
Ray (Chip) Newton, NPF board of directors chair, also chaired the Strategic Planning Task Force. “We had a very dedicated group of individuals on the task force representing patients, medical professionals, staff, the board, the medical board, and a former industry executive," he says. “We’re all very excited about the outcome of this plan, particularly the research initiatives we've set in motion. We're eager to see what the future holds.”
We launched our third strategic plan on July 1, 2019, the first day of our fiscal year. This plan will see us through to June 30, 2024. With your help, we can succeed in driving research efforts to help the psoriatic disease community.
“Given the more effective medications that are now available, it is a time of much excitement in the psoriasis community as we have come to understand that we can often get patients’ skin to be clear or almost clear,” says Abby S. Van Voorhees, M.D., chair of dermatology at Eastern Virginia Medical School and chair of NPF’s medical board. “The Treat to Target recommendations embody this enthusiasm and newfound therapeutic abilities, and keep the goals for our patients high. Finding a diagnostic test for psoriatic arthritis would be another sentinel step in the care of our patients.”
Road Map for Research
Our research goal is to lead collaborative, transformational research in psoriatic disease. Stacie Bell, Ph.D., NPF’s chief scientific and medical officer, sees great promise in this goal. “There are a number of aspects within this goal that will directly benefit individuals impacted by psoriasis and psoriatic arthritis, as well as integrating efforts of the NPF and the community,” she says. “The commitment to research continues for NPF, but will grow to new heights.”
Let’s look at four specific focuses within that goal and the steps we’ll take to reach each one.
Reduce to Zero the Burden of Psoriasis
How, for example, do we plan to reduce to zero the burden of psoriasis on the skin? How will we increase the number of patients in remission? How will we extend these remission periods? In our strategic plan, we have four specific areas of focus:
- Generate research resulting in higher numbers of patients in remission and research to identify tools that extend remission periods.
- Regularly analyze and publish NPF-generated data, such as our annual survey
- Integrate current psoriasis research in all NPF materials, including educational programs and the Journal of Psoriasis and Psoriatic Arthritis, our peer-reviewed journal for professional members and specialists in dermatology and rheumatology
Develop a Diagnostic Test for PsA
There are diagnostic tests for rheumatoid arthritis and osteoarthritis, but not for PsA. We have to fill that gap.
“The goal of developing a psoriatic arthritis diagnostic test is particularly appealing due to the massive delay of diagnosis of many patients,” says Wilson Liao, M.D., director of the UCSF Psoriasis Center at the University of California, San Francisco, and the head of NPF’s scientific advisory committee. “The ability to diagnose psoriatic arthritis earlier would have a huge impact on our ability to prevent long-term joint damage.”
This is why we’re funding six Psoriatic Arthritis Diagnostic Test Grants during the first year of the 2019 to 2024 plan. We’ll provide more funding to these projects if they demonstrate progress during the proof-of-concept phase (during which a researcher demonstrates that the funded project has practical potential).
Prevent the Onset of Psoriatic Disease
The best way to treat the disease is to stop it before it starts. Individuals and teams will form collaborations and apply for a special new grant with the aim of researching interventions that will prevent the onset of psoriatic disease and related conditions. We launched the Psoriasis Prevention Initiative – a mechanism to fund multi-institution, multi-disciplinary clusters of virtual teams – with funding beginning in 2020.
Reduce the Time Between the First Appearance of PsA Symptoms and a Diagnosis
Too many people living with psoriasis report symptoms of what turns out to be PsA – but the diagnosis often lags by months or years. According to the 2018 NPF annual survey of our community, many people are diagnosed within months of exhibiting symptoms of PsA, but for some it takes years. Waiting years to be diagnosed through a process of elimination is not an effective treatment strategy.
We aim to reduce the time to diagnosis by 50 percent. To do this, we will identify a reliable, predictive model for the onset of psoriatic disease, the potential relationship to comorbid conditions and the best treatment practices.
We’ll partner with other organizations and experts pursuing innovative research on predictive models and comorbidities in psoriatic disease. We’ll disseminate our findings to keep everyone working with us, as well as scientists in the lab and health care providers in the field, up-to-date on the onset, progression and treatment of psoriatic disease.
“I am proud to have witnessed the growth of the NPF over the past decade into a powerhouse organization,” Liao says. “We have supported the development of an entire generation of psoriatic disease researchers who are ready to tackle the most difficult challenges in the field, with the ultimate goal of helping psoriatic patients worldwide.”