Michael Siegel, PhD, of the National Psoriasis Foundation, talks with The Dermatologist about the Foundation’s ongoing efforts in psoriatic disease.
For the millions of Americans living with psoriasis and psoriatic arthritis, these systemic inflammatory diseases require lifelong management and support. The National Psoriasis Foundation (NPF) mission is to drive efforts to cure psoriatic disease and improve the lives of those affected.
In an interview with The Dermatologist, Michael Siegel, PhD, NPF director of research programs, discusses various topics on psoriatic disease including research, NPF’s short- and long-range goals, patient and clinician education, and the importance of the patient voice. Dr Siegel joined NPF in 2014 and oversees the Foundation’s research activities, including research grants and fellowships, scientific meetings, and the National Psoriasis Victor Henschel BioBank.
Q. Can you tell The Dermatologist readers about NPF?
a. Based in Portland, Oregon, NPF is the world’s largest nonprofit organization serving patients with psoriatic disease.. Driven by an aggressive strategic plan our key priorities are research, education, and advocacy. But we infuse the patient voice into everything we do. NPF is always creating new programs to make sure it is serving the needs of the patient community.
Q. This is an exciting time for psoriasis research. How does this affect NPF and the psoriasis patient population?
a. It may be the best time in history to be diagnosed with psoriasis or psoriatic arthritis. Recent discoveries in the last few decades have elevated the understanding of the the immunology behind psoriatic disease, as well as the systemic consequences. And with that, researchers have been able to identify new therapeutic targets that have led to some remarkable results for patients. NPF is a nimble organization. As such, we’re able to act on changing trends, build programs, and put things in place rapidly. As new things have developed in the research community, we’ve been able to keep pace with that.
In terms of our research programs, we’ve been able to add new grant and fellowship programs to better support people doing the projects. In the last 2 years, we’ve added 4 new programs. The Early Career Research Grant supports scientists very early on in their career. We formed a partnership with the National Heart, Lung, and Blood Institute at National Institutes of Health (NIH) for a specific fellowship supporting research into the cardiovascular comorbidities of psoriatic disease. NPF also added the 2017 Public Health Challenge Grant that addresses public health-related issues of psoriatic disease in line with the recent agenda1,2 from the Centers for Disease Control and Prevention that identified the needs for public health studies in psoriasis and psoriatic arthritis.
We also just put in place Bridge Grants to support researchers who might need another year to collect data to submit a successful larger grant to the NIH. All of these mechanisms have been put in place to keep pace with the changing landscape of psoriatic disease research and evolving challenges of the scientific careerpath.
Medical education has been growing recently as well, with new programs to better educate providers working with patients with psoriatic disease and to keep them up to speed with all the new developments. On our advocacy side, we are active at both the state and federal levels to keep pace with the challenges affecting patient access to treatment.
Q. What are some of the Foundation’s short- and long-term goals?
a. Our long-term mission is to find a cure for psoriatic disease and improve the lives of those affected. We’re in the midst of a 5-year strategic plan that began in fiscal year 2014 and have many milestones we intend to accomplish as we work toward that broader mission. Supporting and growing the research community is one of our key objectives, both through NPF research programs and also supporting external research. Key milestones include seeing an increase in the number of people focusing on psoriatic disease research and an increase in the federal investment in psoriatic disease research. Another important objective is to improve health outcomes for all those living with psoriatic disease. We want people to be able to access treatments that work for them, to be happy with the treatments they are on, and to be satisfied with the results so it’s less a burden to their every day life.
Q. What is NPF most excited about going into the future?
a. Looking back at the past helps bring into perspective the excitement of the future. Not so long ago, psoriasis was a taboo subject. People didn’t talk about it. People thought it was contagious. There was a lot of discrimination and stigma associated with psoriasis. There had not been a true understanding of the disease and that resulted in psychosocial consequences, many of which still persist. However, recently there has been a change in thinking. People are understanding more about psoriasis. They know it’s not a contagious disease. Research has led to an understanding that it is a systemic inflammatory disease with whole body consequences. We’ve also seen recent advances in the understanding of the underlying biology. Before it was thought that psoriasis was just a skin disease and the immune system connection was not understood. There was a lot of symptom management and less getting at the actual core pathology behind the disease. Now we see several things happening. There is an understanding, acceptance, and appreciation of the patient experience; and also there is a deep understanding of the underlying biology of psoriasis, along with the new technologies such as different ways to measure outcomes and deliver treatments, interface with patients, and improve the relationship between patients and providers. Seeing it all come together, I think there is no limit to what we may see in the future.
Q. How can dermatologists, dermatology physician assistants (PAs), and dermatology nurses help NPF reach its goals?
a. NPF wants dermatologists, PAs, and nurses to be aware of all the resources and education available. Continuing medical education activities are available through NPF to the entire spectrum of health care providers. We also have a newly launched Patient Navigation Center—a one-to-one case management center operated by NPF that helps patients through the challenges of psoriatic disease from start to finish. Health care providers can refer patients to the Navigation Center at any stage of the disease to receive support that helps them access a therapy they are happy with. We want providers to be aware of the importance of a timely diagnosis and of the entire spectrum of associated conditions with psoriasis and psoriatic arthritis... Ultimately it’s about getting patients on a treatment appropriate to the level of their disease severity as quickly as possible.
Q. Can you describe the impact of the National Psoriasis Victor Henschel BioBank?
a. The BioBank has made a tremendous impact. since its launch in 2006. We’ve collected about 3000 samples from both healthy controls and patients with psoriasis and/or psoriatic arthritis. The DNA that was collected has contributed to at least 5 publications,3-7 including reports of new susceptibility loci for psoriasis and, more recently, identifying genetic markers for psoriatic arthritis in patients with psoriasis. This is an important discovery as we work toward early diagnosis of psoriatic arthritis in patients with psoriasis so they can receive treatment quickly. Another recent publication using BioBank samples revealed ethnic differences in the genetic susceptibility to psoriasis.
Q. What is the NPF position on biosimiliars and their potential effect on patients who are living with psoriasis?
a. Biosimilar products are an extremely active area right now. Fundamentally, the NPF position on biosimilars is based on our belief that patient-provider relationship should be the primary factor driving treatment decisions. Our government relations and advocacy department is active working in this area, together with our medical board, and they’ve drafted an an official position statement that’s available on our website.8 We’re interested in protecting notification of both providers and patients when a biosimilar is being used, unique naming of biosimilar products, and robust record keeping. n
References
1. Centers for Disease Control and Prevention. Developing and Addressing the Public Health Agenda for Psoriasis and Psoriatic Arthritis. https://www.cdc.gov/psoriasis/pdf/public-health-agenda-for-psoriasis.pdf. Accessed August 23, 2016.
2. Helmick CG, Sacks JJ, Glefand JM, et al. Psoriasis and psoriatic arthritis: a public health agenda. Am J Prev Med. 2013;44(4):424-426.
3. Tsoi LC, Spain SL, Knight J, et al. Identification of 15 new psoriasis susceptibility loci highlights the role of innate immunity. Nat Genet. 2012;44(12):1341-1348.
4. Tsoi LC, Spain SL, Ellinghaus E, et al. Enhanced meta-analysis and replication studies identify five new psoriasis susceptibility loci. Nat Commun. 2015;6:7001.
5. Jordan CT, Cao L, Roberson ED, et al. Rare and common variants in CARD14, encoding an epidermal regulator of NF-kappaB, in psoriasis. Am J Hum Genet. 2012;90(5):796-808.
6. Yin X, Low HQ, Wang L, et al. Genome-wide meta-analysis identifies multiple novel associations and ethnic heterogeneity of psoriasis susceptibility. Nat Commun. 2015;6:6916.
7. Stuart PE, Nair RP, Tsoi LC, et al. Genome-wide association analysis of psoriatic arthritis and cutaneous psoriasis reveals differences in their genetic architecture. Am J Hum Genet. 2015;97(6):816-836.
8. Biosimilar substation. National Psoriasis Foundation website. https://www.psoriasis.org/about-psoriasis/treatments/statement-on-biosimilars. Revised February 10, 2015. Accessed August 23, 2016.
Michael Siegel, PhD, of the National Psoriasis Foundation, talks with The Dermatologist about the Foundation’s ongoing efforts in psoriatic disease.
For the millions of Americans living with psoriasis and psoriatic arthritis, these systemic inflammatory diseases require lifelong management and support. The National Psoriasis Foundation (NPF) mission is to drive efforts to cure psoriatic disease and improve the lives of those affected.
In an interview with The Dermatologist, Michael Siegel, PhD, NPF director of research programs, discusses various topics on psoriatic disease including research, NPF’s short- and long-range goals, patient and clinician education, and the importance of the patient voice. Dr Siegel joined NPF in 2014 and oversees the Foundation’s research activities, including research grants and fellowships, scientific meetings, and the National Psoriasis Victor Henschel BioBank.
Q. Can you tell The Dermatologist readers about NPF?
a. Based in Portland, Oregon, NPF is the world’s largest nonprofit organization serving patients with psoriatic disease.. Driven by an aggressive strategic plan our key priorities are research, education, and advocacy. But we infuse the patient voice into everything we do. NPF is always creating new programs to make sure it is serving the needs of the patient community.
Q. This is an exciting time for psoriasis research. How does this affect NPF and the psoriasis patient population?
a. It may be the best time in history to be diagnosed with psoriasis or psoriatic arthritis. Recent discoveries in the last few decades have elevated the understanding of the the immunology behind psoriatic disease, as well as the systemic consequences. And with that, researchers have been able to identify new therapeutic targets that have led to some remarkable results for patients. NPF is a nimble organization. As such, we’re able to act on changing trends, build programs, and put things in place rapidly. As new things have developed in the research community, we’ve been able to keep pace with that.
In terms of our research programs, we’ve been able to add new grant and fellowship programs to better support people doing the projects. In the last 2 years, we’ve added 4 new programs. The Early Career Research Grant supports scientists very early on in their career. We formed a partnership with the National Heart, Lung, and Blood Institute at National Institutes of Health (NIH) for a specific fellowship supporting research into the cardiovascular comorbidities of psoriatic disease. NPF also added the 2017 Public Health Challenge Grant that addresses public health-related issues of psoriatic disease in line with the recent agenda1,2 from the Centers for Disease Control and Prevention that identified the needs for public health studies in psoriasis and psoriatic arthritis.
We also just put in place Bridge Grants to support researchers who might need another year to collect data to submit a successful larger grant to the NIH. All of these mechanisms have been put in place to keep pace with the changing landscape of psoriatic disease research and evolving challenges of the scientific careerpath.
Medical education has been growing recently as well, with new programs to better educate providers working with patients with psoriatic disease and to keep them up to speed with all the new developments. On our advocacy side, we are active at both the state and federal levels to keep pace with the challenges affecting patient access to treatment.
Q. What are some of the Foundation’s short- and long-term goals?
a. Our long-term mission is to find a cure for psoriatic disease and improve the lives of those affected. We’re in the midst of a 5-year strategic plan that began in fiscal year 2014 and have many milestones we intend to accomplish as we work toward that broader mission. Supporting and growing the research community is one of our key objectives, both through NPF research programs and also supporting external research. Key milestones include seeing an increase in the number of people focusing on psoriatic disease research and an increase in the federal investment in psoriatic disease research. Another important objective is to improve health outcomes for all those living with psoriatic disease. We want people to be able to access treatments that work for them, to be happy with the treatments they are on, and to be satisfied with the results so it’s less a burden to their every day life.
Q. What is NPF most excited about going into the future?
a. Looking back at the past helps bring into perspective the excitement of the future. Not so long ago, psoriasis was a taboo subject. People didn’t talk about it. People thought it was contagious. There was a lot of discrimination and stigma associated with psoriasis. There had not been a true understanding of the disease and that resulted in psychosocial consequences, many of which still persist. However, recently there has been a change in thinking. People are understanding more about psoriasis. They know it’s not a contagious disease. Research has led to an understanding that it is a systemic inflammatory disease with whole body consequences. We’ve also seen recent advances in the understanding of the underlying biology. Before it was thought that psoriasis was just a skin disease and the immune system connection was not understood. There was a lot of symptom management and less getting at the actual core pathology behind the disease. Now we see several things happening. There is an understanding, acceptance, and appreciation of the patient experience; and also there is a deep understanding of the underlying biology of psoriasis, along with the new technologies such as different ways to measure outcomes and deliver treatments, interface with patients, and improve the relationship between patients and providers. Seeing it all come together, I think there is no limit to what we may see in the future.
Q. How can dermatologists, dermatology physician assistants (PAs), and dermatology nurses help NPF reach its goals?
a. NPF wants dermatologists, PAs, and nurses to be aware of all the resources and education available. Continuing medical education activities are available through NPF to the entire spectrum of health care providers. We also have a newly launched Patient Navigation Center—a one-to-one case management center operated by NPF that helps patients through the challenges of psoriatic disease from start to finish. Health care providers can refer patients to the Navigation Center at any stage of the disease to receive support that helps them access a therapy they are happy with. We want providers to be aware of the importance of a timely diagnosis and of the entire spectrum of associated conditions with psoriasis and psoriatic arthritis... Ultimately it’s about getting patients on a treatment appropriate to the level of their disease severity as quickly as possible.
Q. Can you describe the impact of the National Psoriasis Victor Henschel BioBank?
a. The BioBank has made a tremendous impact. since its launch in 2006. We’ve collected about 3000 samples from both healthy controls and patients with psoriasis and/or psoriatic arthritis. The DNA that was collected has contributed to at least 5 publications,3-7 including reports of new susceptibility loci for psoriasis and, more recently, identifying genetic markers for psoriatic arthritis in patients with psoriasis. This is an important discovery as we work toward early diagnosis of psoriatic arthritis in patients with psoriasis so they can receive treatment quickly. Another recent publication using BioBank samples revealed ethnic differences in the genetic susceptibility to psoriasis.
Q. What is the NPF position on biosimiliars and their potential effect on patients who are living with psoriasis?
a. Biosimilar products are an extremely active area right now. Fundamentally, the NPF position on biosimilars is based on our belief that patient-provider relationship should be the primary factor driving treatment decisions. Our government relations and advocacy department is active working in this area, together with our medical board, and they’ve drafted an an official position statement that’s available on our website.8 We’re interested in protecting notification of both providers and patients when a biosimilar is being used, unique naming of biosimilar products, and robust record keeping. n
References
1. Centers for Disease Control and Prevention. Developing and Addressing the Public Health Agenda for Psoriasis and Psoriatic Arthritis. https://www.cdc.gov/psoriasis/pdf/public-health-agenda-for-psoriasis.pdf. Accessed August 23, 2016.
2. Helmick CG, Sacks JJ, Glefand JM, et al. Psoriasis and psoriatic arthritis: a public health agenda. Am J Prev Med. 2013;44(4):424-426.
3. Tsoi LC, Spain SL, Knight J, et al. Identification of 15 new psoriasis susceptibility loci highlights the role of innate immunity. Nat Genet. 2012;44(12):1341-1348.
4. Tsoi LC, Spain SL, Ellinghaus E, et al. Enhanced meta-analysis and replication studies identify five new psoriasis susceptibility loci. Nat Commun. 2015;6:7001.
5. Jordan CT, Cao L, Roberson ED, et al. Rare and common variants in CARD14, encoding an epidermal regulator of NF-kappaB, in psoriasis. Am J Hum Genet. 2012;90(5):796-808.
6. Yin X, Low HQ, Wang L, et al. Genome-wide meta-analysis identifies multiple novel associations and ethnic heterogeneity of psoriasis susceptibility. Nat Commun. 2015;6:6916.
7. Stuart PE, Nair RP, Tsoi LC, et al. Genome-wide association analysis of psoriatic arthritis and cutaneous psoriasis reveals differences in their genetic architecture. Am J Hum Genet. 2015;97(6):816-836.
8. Biosimilar substation. National Psoriasis Foundation website. https://www.psoriasis.org/about-psoriasis/treatments/statement-on-biosimilars. Revised February 10, 2015. Accessed August 23, 2016.
Michael Siegel, PhD, of the National Psoriasis Foundation, talks with The Dermatologist about the Foundation’s ongoing efforts in psoriatic disease.
For the millions of Americans living with psoriasis and psoriatic arthritis, these systemic inflammatory diseases require lifelong management and support. The National Psoriasis Foundation (NPF) mission is to drive efforts to cure psoriatic disease and improve the lives of those affected.
In an interview with The Dermatologist, Michael Siegel, PhD, NPF director of research programs, discusses various topics on psoriatic disease including research, NPF’s short- and long-range goals, patient and clinician education, and the importance of the patient voice. Dr Siegel joined NPF in 2014 and oversees the Foundation’s research activities, including research grants and fellowships, scientific meetings, and the National Psoriasis Victor Henschel BioBank.
Q. Can you tell The Dermatologist readers about NPF?
a. Based in Portland, Oregon, NPF is the world’s largest nonprofit organization serving patients with psoriatic disease.. Driven by an aggressive strategic plan our key priorities are research, education, and advocacy. But we infuse the patient voice into everything we do. NPF is always creating new programs to make sure it is serving the needs of the patient community.
Q. This is an exciting time for psoriasis research. How does this affect NPF and the psoriasis patient population?
a. It may be the best time in history to be diagnosed with psoriasis or psoriatic arthritis. Recent discoveries in the last few decades have elevated the understanding of the the immunology behind psoriatic disease, as well as the systemic consequences. And with that, researchers have been able to identify new therapeutic targets that have led to some remarkable results for patients. NPF is a nimble organization. As such, we’re able to act on changing trends, build programs, and put things in place rapidly. As new things have developed in the research community, we’ve been able to keep pace with that.
In terms of our research programs, we’ve been able to add new grant and fellowship programs to better support people doing the projects. In the last 2 years, we’ve added 4 new programs. The Early Career Research Grant supports scientists very early on in their career. We formed a partnership with the National Heart, Lung, and Blood Institute at National Institutes of Health (NIH) for a specific fellowship supporting research into the cardiovascular comorbidities of psoriatic disease. NPF also added the 2017 Public Health Challenge Grant that addresses public health-related issues of psoriatic disease in line with the recent agenda1,2 from the Centers for Disease Control and Prevention that identified the needs for public health studies in psoriasis and psoriatic arthritis.
We also just put in place Bridge Grants to support researchers who might need another year to collect data to submit a successful larger grant to the NIH. All of these mechanisms have been put in place to keep pace with the changing landscape of psoriatic disease research and evolving challenges of the scientific careerpath.
Medical education has been growing recently as well, with new programs to better educate providers working with patients with psoriatic disease and to keep them up to speed with all the new developments. On our advocacy side, we are active at both the state and federal levels to keep pace with the challenges affecting patient access to treatment.
Q. What are some of the Foundation’s short- and long-term goals?
a. Our long-term mission is to find a cure for psoriatic disease and improve the lives of those affected. We’re in the midst of a 5-year strategic plan that began in fiscal year 2014 and have many milestones we intend to accomplish as we work toward that broader mission. Supporting and growing the research community is one of our key objectives, both through NPF research programs and also supporting external research. Key milestones include seeing an increase in the number of people focusing on psoriatic disease research and an increase in the federal investment in psoriatic disease research. Another important objective is to improve health outcomes for all those living with psoriatic disease. We want people to be able to access treatments that work for them, to be happy with the treatments they are on, and to be satisfied with the results so it’s less a burden to their every day life.
Q. What is NPF most excited about going into the future?
a. Looking back at the past helps bring into perspective the excitement of the future. Not so long ago, psoriasis was a taboo subject. People didn’t talk about it. People thought it was contagious. There was a lot of discrimination and stigma associated with psoriasis. There had not been a true understanding of the disease and that resulted in psychosocial consequences, many of which still persist. However, recently there has been a change in thinking. People are understanding more about psoriasis. They know it’s not a contagious disease. Research has led to an understanding that it is a systemic inflammatory disease with whole body consequences. We’ve also seen recent advances in the understanding of the underlying biology. Before it was thought that psoriasis was just a skin disease and the immune system connection was not understood. There was a lot of symptom management and less getting at the actual core pathology behind the disease. Now we see several things happening. There is an understanding, acceptance, and appreciation of the patient experience; and also there is a deep understanding of the underlying biology of psoriasis, along with the new technologies such as different ways to measure outcomes and deliver treatments, interface with patients, and improve the relationship between patients and providers. Seeing it all come together, I think there is no limit to what we may see in the future.
Q. How can dermatologists, dermatology physician assistants (PAs), and dermatology nurses help NPF reach its goals?
a. NPF wants dermatologists, PAs, and nurses to be aware of all the resources and education available. Continuing medical education activities are available through NPF to the entire spectrum of health care providers. We also have a newly launched Patient Navigation Center—a one-to-one case management center operated by NPF that helps patients through the challenges of psoriatic disease from start to finish. Health care providers can refer patients to the Navigation Center at any stage of the disease to receive support that helps them access a therapy they are happy with. We want providers to be aware of the importance of a timely diagnosis and of the entire spectrum of associated conditions with psoriasis and psoriatic arthritis... Ultimately it’s about getting patients on a treatment appropriate to the level of their disease severity as quickly as possible.
Q. Can you describe the impact of the National Psoriasis Victor Henschel BioBank?
a. The BioBank has made a tremendous impact. since its launch in 2006. We’ve collected about 3000 samples from both healthy controls and patients with psoriasis and/or psoriatic arthritis. The DNA that was collected has contributed to at least 5 publications,3-7 including reports of new susceptibility loci for psoriasis and, more recently, identifying genetic markers for psoriatic arthritis in patients with psoriasis. This is an important discovery as we work toward early diagnosis of psoriatic arthritis in patients with psoriasis so they can receive treatment quickly. Another recent publication using BioBank samples revealed ethnic differences in the genetic susceptibility to psoriasis.
Q. What is the NPF position on biosimiliars and their potential effect on patients who are living with psoriasis?
a. Biosimilar products are an extremely active area right now. Fundamentally, the NPF position on biosimilars is based on our belief that patient-provider relationship should be the primary factor driving treatment decisions. Our government relations and advocacy department is active working in this area, together with our medical board, and they’ve drafted an an official position statement that’s available on our website.8 We’re interested in protecting notification of both providers and patients when a biosimilar is being used, unique naming of biosimilar products, and robust record keeping. n
References
1. Centers for Disease Control and Prevention. Developing and Addressing the Public Health Agenda for Psoriasis and Psoriatic Arthritis. https://www.cdc.gov/psoriasis/pdf/public-health-agenda-for-psoriasis.pdf. Accessed August 23, 2016.
2. Helmick CG, Sacks JJ, Glefand JM, et al. Psoriasis and psoriatic arthritis: a public health agenda. Am J Prev Med. 2013;44(4):424-426.
3. Tsoi LC, Spain SL, Knight J, et al. Identification of 15 new psoriasis susceptibility loci highlights the role of innate immunity. Nat Genet. 2012;44(12):1341-1348.
4. Tsoi LC, Spain SL, Ellinghaus E, et al. Enhanced meta-analysis and replication studies identify five new psoriasis susceptibility loci. Nat Commun. 2015;6:7001.
5. Jordan CT, Cao L, Roberson ED, et al. Rare and common variants in CARD14, encoding an epidermal regulator of NF-kappaB, in psoriasis. Am J Hum Genet. 2012;90(5):796-808.
6. Yin X, Low HQ, Wang L, et al. Genome-wide meta-analysis identifies multiple novel associations and ethnic heterogeneity of psoriasis susceptibility. Nat Commun. 2015;6:6916.
7. Stuart PE, Nair RP, Tsoi LC, et al. Genome-wide association analysis of psoriatic arthritis and cutaneous psoriasis reveals differences in their genetic architecture. Am J Hum Genet. 2015;97(6):816-836.
8. Biosimilar substation. National Psoriasis Foundation website. https://www.psoriasis.org/about-psoriasis/treatments/statement-on-biosimilars. Revised February 10, 2015. Accessed August 23, 2016.
