Q: What are the challenges in psoriasis research that the National Psoriasis Foundation can help address?
- A major challenge in psoriasis research that the National Psoriasis Foundation (NPF) can help address is the overall shortage in federal funding for psoriatic disease research. The NPF offers an avenue for researchers to get support for their work that may not receive funding anywhere else.
- Another challenge in psoriasis research is the perception that psoriasis can be just a disease of the skin, while it is in fact a systemic inflammatory disease that affects many different parts of the body with long-term health implications. Psoriasis is tied to an increased risk for metabolic disorder, cardiovascular disease, and obesity, among other health conditions, and many of the research projects we fund are looking at psoriasis and its connection to these other diseases. The NPF also works to address this issue through efforts to educate and increase awareness about the true nature of psoriasis.
- The final major challenge is patient engagement. As a patient advocacy organization, NPF is in a position to translate patient priorities into research activities. Collecting the patient consensus and crafting this into effective research initiatives is a challenge.
Q: The foundation is working to establish international standards for psoriasis outcomes. Why is this important?
As quality standards are increasingly in demand throughout medicine, dermatology needs to establish outcome measures to quantify the effectiveness of treatments and providers. As a result, existing tools to measure disease severity and treatment outcomes do not assess the true scope of psoriasis. For example, a simple measure of body surface area affected by psoriasis does not account for body location, itch, or extent of cardiovascular comorbidities. NPF views this as a significant obstacle in the path to creating better treatments and is therefore engaged in efforts to develop validated, standardized outcomes for psoriasis treatment.
To this end, the National Psoriasis Foundation and a group of leaders in the dermatology field launched the International Dermatology Outcomes Measures (IDEOM) consortium. IDEOM, formed in 2013, brings together physicians, researchers, regulators, industry, and patients from around the globe to develop and confirm common measurement for treatment effectiveness and disease outcomes. By bringing together these key stakeholders in the mission to develop standardized outcomes, the impact of a treatment on the psoriasis patient experience may be more accurately measured.
Q: Your research efforts seem to focus on grants and fellowships, a biobank, and advocacy. Why will it take a holistic approach to make progress against psoriasis?
The field of psoriasis research is met with many challenges. Despite its prevalence and many highly effective treatments, there remain many unanswered questions and many patients without a satisfactory level of control over their disease. To meet this need, we need scientists exploring new ideas and developing new technologies, clinicians bringing promising new discoveries from the lab bench to the clinic, and advocacy efforts to pave the way for patient access to treatment and to build the infrastructure for research to take place. No one piece would exist without the others, and the nature of this relationship is why NPF takes a holistic approach to research.
This month marks a year since the National Psoriasis Foundation launched a new five-year strategic plan. This new plan was bigger, bolder, and more ambitious than any other strategic plan that has previously guided the foundation. This sort of holistic and aggressive approach is what it is going to take to drive efforts toward a cure and improve health outcomes for individuals living with psoriatic disease.
Q: What do you consider the foundation’s greatest accomplishments?
• To date, the National Psoriasis Foundation has funded more than $11 million in psoriatic disease research grants and fellowships, as well as served more than 2 million people annually through our advocacy and health education initiatives.
• Growing new funding mechanisms and pathways through a robust research grant and fellowship portfolio and offering support to researchers who may not get funded in any other capacity. Ultimately, helping to create pathways for researchers to turn ideas into National Institutes of Health (NIH)-funded research enterprises.
• Funding early-stage studies that are informing drug development, leading to an increased understanding of psoriasis comorbidities, such as the connection between psoriasis and cardiovascular disease, and improving health outcomes and disease management.
• Getting patients involved in the research process through a patient-powered research network called Citizen Pscientist that has received funding from the Patient-Centered Outcomes Research Institute (PCORI). Citizen Pscientist will connect patients and researchers, allow for people to share data about their disease, make their own hypotheses, and inform both NPF and researchers about potential research projects/ideas.
• Bringing dermatologists and rheumatologists together to collaborate on research, patient care, and best practices for psoriasis and psoriatic arthritis.
• Collaborating with Corronna to launch the first nonprofit psoriasis registry. The Corrona Psoriasis Registry will enroll more than 10,000 patients and follow them for at least eight years to track the safety and effectiveness of psoriasis therapies.
• Launching the National Psoriasis Victor Henschel BioBank. To date, the biobank includes samples from about 1,500 people with psoriatic disease and almost 1,500 people without psoriatic disease. In 2010, the NPF began releasing biobank samples to researchers investigating the genetics of psoriatic disease. Thanks to these samples, new genetic factors that contribute to the onset of psoriasis have been discovered.
• After a multi-year advocacy campaign led by the National Psoriasis Foundation, Congress allocated $1.5 million to the Centers for Disease Control and Prevention to develop the first-ever Psoriasis and Psoriatic Arthritis Public Health Agenda, which was published in February 2013 and identifies the research gaps that must be addressed to make progress against psoriatic disease.
Q: What are your top research goals over the next year, and what will it take to reach those goals?
The NPF’s 5-year strategic plan aims to accelerate discovery to cure psoriatic disease by creating a community of psoriatic disease patients who collaborate in research and increasing the number of scientists studying psoriatic disease.
Over the next year, we will work to bring more patients into the research process. To reach this goal, NPF is launching a patient-centered research platform called Citizen Pscientist. Citizen Pscientist, which is being funded by a Pipeline-to-Proposal award from PCORI, will allow psoriatic disease patients to share and view data about their disease within the community and form their own hypotheses. These hypotheses will form the basis for discussion between patients and will be used to guide psoriatic disease research efforts.
Additionally, we’ll build the next generation of scientists focused on psoriatic disease. Our grants will address the needs of researchers and their projects at every stage of the process. NPF has traditionally funded one-year Discovery Grants, two-year Translational Research Grants, and one-year Medical Dermatology Fellowships. Recently it added a collaborative two-year grant with the Arthritis National Research Foundation for psoriatic arthritis. To complement these awards, NPF is adding a one-year Early Career Research Grant to support graduate students and postdoctoral researchers and the NIH-NPF Robertson Fellowship in Translational Medicine, a unique two-year program where fellows will receive training to conduct clinical research on cardiovascular comorbidities of psoriasis at the National Heart, Lung, and Blood Institute. NPF is actively exploring the best strategies to support researchers at critical times in their careers and to build additional collaborative grants and training programs.