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FlakeHQ Interviews:

Liz Horn

 Director of Research
National Psoriasis Foundation

Interviewed by Ed Dewke  
in December, 2006

Dewke:  The National Psoriasis Foundation exists to “promote awareness and understanding, ensure access to treatment and support research that will lead to effective management and, ultimately, a cure.”  Liz Horn directs the research third of this trio.   All of us who belong to the Foundation have our personal reasons for contributing:  Many of us are touched daily by the Foundation’s information stores and advocacy; countless thousands through the years have relied on the Foundation to help them find and manage treatments and therapies; but I doubt if a single contributing member does not hope and expect a portion of their contribution to move us closer to a cure for our disease.

Liz Horn became the Director of Research at the Foundation in March, 2004.  She is a skin biologist by training and after receiving her PhD she did a fellowship in medical informatics — a field that studies the use of computers and technology in healthcare. 

In her position as Director of Research, Liz is responsible for all research programs. She developed the National Psoriasis Victor Henschel BioBank, which launched this past fall, and runs its day to day operations. She administers the Foundation’s competitive research grant program that awards seed money to promising investigators. She manages the Foundation’s biannual surveys that document the burden of the disease — information that is used to educate a variety of audiences including medical professionals, insurance payers, legislators, the public and the media.  And she serves as the Foundation’s scientific liaison. -Ed Dewke

*****

Dewke:  Tell us a little about the history of the Foundation’s involvement in research. 
 
Horn:  The Psoriasis Foundation has a rich history of research. The first research grant was awarded in 1975. In 1994, we opened the National Psoriasis Tissue Bank. Samples collected through this resource led to the first location of a suspected gene for psoriasis and the subsequent identification of three genes that are involved in the development of psoriasis. We have also funded the International Psoriasis Genetics Committee, a collaboration to identify psoriasis genes. I am fortunate to be continuing a rich tradition of research.

 

Dewke:  How much of our current understanding of psoriasis has come from research targeting other diseases or large groups of diseases, like autoimmune diseases? 
 
Horn:  We have learned from other diseases, and I believe it is important to pay attention to a broader field of research.  Louis Pasteur said “Chance favors a prepared mind.”  For instance, cyclosporine was used in transplant patients to suppress the immune system and decrease the chance of rejection of the transplanted organ.  It was observed that in the transplant patients that had psoriasis, the psoriasis got better.  This was a big clue that the immune system was involved in psoriasis.

For the biologics (drugs that target the immune system), it is true that the TNF-blockers (Enbrel, Humira and Remicade) were first approved for other conditions such as rheumatoid arthritis and Crohn’s disease.  Because these drugs are approved for other indications, we have more data with these drugs.  Although these are different patient populations (we don’t know if a person with rheumatoid arthritis is the same as a person with psoriasis), there is more collective clinical experience with these drugs.  With the anti-T cell agents (Amevive and Raptiva), we have a different experience.  These drugs were first approved for psoriasis and both are only approved for psoriasis.  Here we do not have experience from use of these drugs in other conditions.  Instead, these drugs are being studied for other conditions, and psoriasis is providing the experience.

 

Dewke:  The news that came out last October about flakers being at increased risk for heart attack is certainly alarming, but reading the release posted at the Foundation’s web site gives one pause.  Just how strong is the correlation between psoriasis and heart attack?

From the release:

Psoriasis patients have a collection of health risk factors that can include hypertension, diabetes, obesity, smoking and others.  With these factors removed, the risk between psoriasis and heart attack remained, particularly for patients with severe psoriasis in their 40s and 50s....

Dr. Gelfand, lead author of the study, and medical director of the Penn Department of Dermatology’s Clinical Studies Unit, stresses that psoriasis patients should not be alarmed.  But they should examine their modifiable cardiovascular risk factors. 

Why shouldn’t we be alarmed? 

Horn:  This is a good question.  The Gelfand study is the first study to show an increased risk of heart attack in psoriasis patients.  This was a very large study with 130,000 psoriasis patients.  This risk is independent; meaning if you remove other risk factors for cardiovascular disease (e.g. high blood pressure, high cholesterol, being overweight, etc.) there is still a relationship between psoriasis and heart attack.  This risk is greatest in those who have severe disease.  In a 30 year-old person, the overall risk of heart attack is very low.  In the study, a 30-year-old patient with mild psoriasis had only a very small increase in risk of a heart attack compared to a person without psoriasis.  However, in a 30-year-old patient with severe psoriasis, risk of heart attack was more than three times as great.  As we age our overall risk of heart attack increases, as other cardiovascular risk factors increase.  The differences in heart attack risk (between someone who has psoriasis as someone who does not) become smaller with age as everyone’s risk increases.  A 60 year-old patient with psoriasis, either mild or severe, did not have much increased risk of heart attack at all compared to a 60 year old person without psoriasis.

This study gives additional evidence that psoriasis is a serious disease.  Once the results were released, Dr. Gelfand and the Psoriasis Foundation cautioned that patients should not be alarmed but they should be informed.  We didn’t want people with psoriasis to conclude that they were definitely going to have a heart attack.  Their risk is increased, and there are things that people can do to lower risk.  There are many risk factors that can be changed — these are also called modifiable risk factors.  Some examples include quitting smoking, getting to a healthy weight, exercising, if you have diabetes or high cholesterol, making sure they are controlled.  There are also risk factors you can’t change, like family history, so it is important to focus on those that you can change.  It is also important to discuss this with your doctor, your dermatologist and other health care professionals you see.

 

Dewke:  Is there any correlation between increased incidence of heart attack and meds taken to treat severe psoriasis? 

Horn:  That research hasn’t been done yet in people with psoriasis.  In rheumatoid arthritis, it has been shown in 4 different studies that treating the rheumatoid arthritis with a TNF-inhibitor decreases the risk of heart attack in these people.  TNF-inhibitors decrease levels of TNF-alpha and inflammation.  TNF-inhibitors include Enbrel, Humira and Remicade.

 

Dewke:  There’s a lot of information online at psoriasis.org about the National Psoriasis Victor Henschel BioBank, so we don’t need to cover everything about this exciting new development.  But to begin, please describe what you need from us to make the BioBank a valuable research asset. 

Horn:  The National Psoriasis Victor Henschel BioBank is a research initiative of the National Psoriasis Foundation and an important strategy for finding a cure. Currently, we are recruiting for BioBank participants. We are seeking samples from individuals who have psoriasis and/or psoriatic arthritis, and from those who do not. This research study will take place over 5 years and we are looking for a specific profile for participants. There is an application process, and the BioBank team will screen each application. Individuals who qualify to participate will then be asked to submit a blood sample and swab of cheek cells to the BioBank, along with medical histories and associated clinical information.

We need BioBank participants. I would ask everyone to consider being part of the BioBank. You can learn more about the BioBank and register online at www.psoriasis.org/biobank.  You can also spread awareness about psoriasis and the BioBank by telling others and asking others to participate. If you have questions, please contact us at [email protected].

 

Dewke:  How far are we from amassing enough samples?

Horn:  We began online recruitment in September, 2006, and are just beginning the collection of samples and information from the community.  Once our collection of 2,000 samples is complete, qualified scientists will be able to use these samples in their research.  We expect the collection to be complete at the end of 2007, but we need your help.

 

Dewke:  Aside from our hero, Anne Bowcock, PhD, (Washington University in St. Louis), who do you have lined up to use the samples and what kinds of research are anticipated?

Horn:  One of the barriers to psoriasis genetics research is the lack of available samples. Our collection will be made available to all qualified researchers.  We know there is strong psoriasis research occurring at Washington University in St. Louis, University of Michigan, University of Utah and Harvard.  We expect these groups and others to use our samples.  We are working to build the largest and most robust collection.  An important piece is the clinical information registry, where we will follow how psoriasis changes over time by updating our participants’ information on a yearly basis.

 

Dewke:  How does the National Psoriasis Victor Henschel Biobank relate to the Tissue Bank that was established in Texas in 1994?

Horn:  The Tissue Bank was the National Psoriasis Foundation’s original effort to provide a sample collection for psoriasis genetics researchers.  This was a very important initiative for the Psoriasis Foundation and the field of psoriasis research.  The Tissue Bank was seeking samples from multigenerational families with psoriasis and all of the screening and processing took place in Texas.  We are grateful to Dr. Menter, Dr. Bowcock, Melodie Young and others who made the Tissue Bank a success. 

The National Psoriasis Victor Henschel BioBank began recruiting participants in 2006, and uses a different study design.  This research program is seeking individuals with psoriasis who are not related and individuals without psoriasis — a case control strategy.  We are also doing all the screening at the National Psoriasis Foundation’s national office.  The scientific technology and the computer technology have improved greatly over the past 12 years.  We are using the Web site to recruit and are following people over time using a robust clinical information system.

 

Dewke:  Since you want tissue samples from NON-psoriatic people, too; would it help if we enlisted relatives who don’t have the disease?

Horn:   Glad you asked. Actually it would be better if friends and spouses (because they aren’t related by blood) would consider being controls.   We get of our genes from our mom and of our genes from our dad.  We also pass these genes to our children.  Relatives who are related by blood (grandparents, parents, siblings, children, grandchildren) to someone who has psoriasis aren’t eligible to be controls for the BioBank because they could have genes or portions of genes that cause psoriasis.  We will be comparing the genetic profile of cases to the genetic profile of controls — and if the controls have a family history of psoriasis, the experimental results could be muddy (not as clear) to scientists.  If each person in the psoriasis community could ask a friend or spouse to consider being part of the BioBank it would really help our recruitments efforts for the BioBank.

 

Dewke:  What’s the current feeling about gene therapy for psoriasis?  Has the discovery of several likely involved genes complicated the matter and dampened optimism about a gene therapy cure?

Horn:  Gene therapy remains a possibility for psoriasis therapy. We just need to understand the genes that cause psoriasis. There are many talented scientists trying to answer this question, and we believe the BioBank will be a resource to help them.

 

Dewke:  At some point a year or more ago, I read something that suggested the Foundation was going to pursue research about diet and psoriasis.  I see that Dr. Steven Feldman received a grant to do something along these lines.  Can you elaborate on that, and on any other research — prospective or actual — on the correlation between diet and psoriasis?  As the most effective drugs to combat our disease today (i.e., the biologics) are also the most expensive, interest in dietary approaches to psoriasis treatment seems to be increasing.

Horn:  We did fund a grant for Dr. Feldman studying a nutritional intervention in psoriasis.  We expect the results sometime in 2007.  Diet is very hard to study in a scientific way because there are so many variables.  There are many people who have changed their diet and seen improvements in their psoriasis.  Interestingly, there are case reports in the literature of individuals having gastric bypass surgery, losing weight and their psoriasis greatly improving.  Unfortunately, no one knows the exact changes to make, but a healthy diet rich in whole grains and fruits and vegetables probably couldn’t hurt.  Regarding access to treatments, there are many resources on our website at http://www.psoriasis.org/advocacy/assistance/ including information on patient assistance programs to help pay for medications.

 

Dewke:  I recently read Nina Jablonski’s book, Skin: A Natural History (2006; University of California Press).  In this passage (from page 168 of the hardback edition), she says things about psoriasis I’ve never heard before.... 

In individuals who suffer from psoriasis, a particular class of proteins, known as Jun proteins, is in short supply because of altered function at the PSORS4 genetic locus.  This deficiency appears to trigger a cascade of biochemical events in the skin, increasing production of inflammatory compounds and recruiting specific types of white blood cells to specific areas.  These events eventually cause the changes in the skin’s surface appearance and the itchy discomfort that are part of psoriasis.  In other words, genetically based changes in the composition of the epidermis initiate the disease.  Now that the genes and proteins responsible for psoriasis have been tentatively identified, it should soon be possible to use drug therapy to block the expression of the defective skin genes or to produce enough Jun proteins to arrest the inflammatory cascade. 

Really, two questions for you regarding this passage.  Is her description of the cause of psoriasis current and accepted?  (I’d never heard of Jun proteins, or a “PSORS4 genetic locus.”)  And, is the remedial process she forecasts in the last sentence of this excerpt in fact what our current crop of biologic drugs does?

Horn:  Jun proteins are very important signaling molecules in cells. The role of Jun proteins in psoriasis is controversial. A mouse model that deleted the JunB protein in the skin was published in Nature in September 2005. The authors state that this deletion and lack of JunB expression in the skin causes a psoriasis phenotype. Other scientists disagree, and have shown elevated JunB proteins in psoriasis lesions. So, more research needs to be done to clarify the role of Jun proteins in psoriasis. JunB maps to the PSORS6 locus, while S100A8 and S100A9 map to the PSORS4 locus. PSORS stand for psoriasis susceptibility, and there are many PSORS loci in the genome.

 

Dewke:  How does the Foundation decide into what kind of research our investment dollars should go?  Is the Biobank useful for research other than genetic research? 

Horn:  Our Board of Trustees determines the focus of our research efforts. The BioBank came from the desire to find the genes that cause psoriasis and psoriatic arthritis as an important strategy for a cure. Because we are building a robust registry in addition to the genetic samples, this may support epidemiology research in addition to genetic research.

 

Dewke:  Thanks for taking the time to answer these questions.  We appreciate the bridge you are helping build to a new and more comfortable future for all of us who flake.

*****

Visit the National Psoriasis Foundation at
http://www.psoriasis.org

and for specific information about research initiatives:
http://www.psoriasis.org/research/

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