Psoriasis registry: an interview with Dr. Andrew D. Robertson, Chief Scientific and Medical Officer, National Psoriasis Foundation

Published on February 4, 2014 at 8:28 AM · 1 Comment

Interview conducted by , BA Hons (Cantab)

Andrew D. Robertson ARTICLE IMAGE

How common is psoriasis and what is currently known about the causes of the condition?

Psoriasis is the most common autoimmune disease in the US, affecting 2 to 3% of all Americans. Psoriasis often takes profound physical, medical and social tolls on people with the disease, as well as on their family members and other caregivers.

What causes psoriasis in any one individual will stem from a mixture of their genetic background and their environment. Many if not most people with psoriasis have inherited some predisposition to psoriasis from their parents. However, not all people inheriting such a predisposition will develop psoriasis. Factors that might trigger psoriasis include stress, injuries to the skin, some medications, and infections.

What triggers psoriasis, and how, are very active areas of research. The genetics of psoriasis also continues to be a big focus of research.

The National Psoriasis Foundation (NPF) and the Consortium of Rheumatology Researchers of North America, Inc. (CORRONA) have recently announced that they will create a psoriasis registry. What will this involve and how will it help to advance understanding of psoriasis?

Registries are databases where healthcare providers and researchers can collect and explore information about hundreds or thousands of patients with specific medical conditions and treatments. Data for individual patients are recorded on a regular basis for years. This then allows researchers to identify possible patterns among the thousands of patients that might tell us about relationships between health, disease status, and treatments.

The psoriasis registry created by the NPF and CORRONA will allow the research community to identify possible causes of psoriasis, examine the relationship between psoriasis and other health conditions, and study the impact of the disease on quality of life and other outcomes. The psoriasis registry will also be a terrific opportunity to monitor the long-term safety and efficacy of different psoriasis treatments.

What problems do dermatologists face when treating people with psoriasis and how will this registry help to improve patient care?

The good news is that dermatologists and other healthcare providers have many very good treatments to offer their patients. A key challenge in treating psoriasis is that what works for one patient will not necessarily work for another.

Dermatologists and patients may often try two or more different treatments before finding the treatment or combination of treatments that works best for a given patient. And what works best today may not continue working over time.

Another challenge is that we do not yet know how treating psoriasis affects its most common comorbid conditions such as psoriatic arthritis and cardiovascular disease. For example, does aggressive treatment of psoriasis decrease the likelihood of developing comorbidities?

Finally, we do not yet have a cure for psoriasis. For many people with psoriasis, especially those with moderate to severe psoriasis, this means a lifetime of treatments which, again, may need to be changed from time to time.

The psoriasis registry provides an unusual opportunity to track individuals with psoriasis over time. The information recorded on individual patients includes many different measures of health, well-being, psoriasis disease severity, and comorbid conditions (e.g., psoriatic arthritis, cardiovascular disease), and treatments.

The questions that we can address will include a) what treatment works best for an individual patient and why, b) what triggers psoriasis and what circumstances (e.g., treatment, lifestyle) help it go into remission, and c) when and how do comorbid conditions arise and does aggressive treatment of psoriasis decrease the likelihood of developing comorbidities?

Do you think this registry will lead to new treatments being developed?

Your great yes-or-no question evokes in me that common but less-than-satisfying refrain of the researcher: maybe.

I am excited about the registry because it increases the likelihood of finding what causes psoriasis which, in turn, will provide new targets for treatments.

Will the registry help to shed light on the relationship between psoriasis and other health conditions such as heart disease, diabetes and so forth?

Yes, the registry will allow researchers to follow people with psoriasis over time which means that we will undoubtedly see other diseases develop in some psoriasis patients.

This sad fact has a silver-lining: being able to follow this in some detail will reveal critical information about what might lead to these other diseases in people with psoriasis, as well as what might prevent or slow the development of these diseases in people with psoriasis.

I have a hunch that what we learn about these comorbid conditions among psoriasis patients will carry over to a better understanding of these other diseases in people without psoriasis.

What excites you most about the registry?

For the reasons outline above, the NPF has long been deeply interested in seeing a psoriasis disease registry up and running. Now it’s here!

When do you expect we still start seeing analyses of the data collected?

My best estimate right now is that we will be seeing analyses of registry data starting in about 3 years.

Here is the background for my estimate. Patient enrollment will start just as soon as major financial support for the registry is secured. The NPF and CORRONA are in discussions with potential funders now. Once enrollment begins, we will need to see enough patients enrolled (e.g., thousands) for long enough (e.g., 2 years) for the data to reveal meaningful trends.

What do you think the future holds for psoriasis treatments?

I think that the future for psoriasis treatments is bright. We already have many good treatments for people with psoriasis. Unfortunately, not everyone has access to the best current treatments. The NPF has devoted a lot of energy to understanding the barriers to effective treatment – which range from timely diagnosis to cost – and the NPF addresses all of the major barriers in its education, communications, outreach, and advocacy programs.

We clearly need more and better treatments for psoriasis. For example, even the best treatments today do not work for everyone. For those with moderate to severe psoriasis, the most effective treatments are biologics. However, these can be expensive, occasionally inconvenient, may give rise to undesirable side effects, and their long-term use is still a subject of investigation.

The registry will be part of the bigger picture of ongoing research worldwide into the causes of psoriasis. As such, the registry will contribute significantly to identifying new targets for treatment and turning these targets into new therapies.

Where can readers find more information?

The National Psoriasis Foundation’s website hosts a wealth of up-to-date information about psoriasis and its treatments. We will be providing updates here about the registry.

Psoriasis.org

About Dr. Andrew D. Robertson

Andrew D. Robertson BIG IMAGEDr. Robertson joined the National Psoriasis Foundation in 2012 as its chief scientific and medical officer. He brings more than 20 years of biomedical, life science and academic research experience to the organization.

Dr. Robertson will oversee all of the Foundation's research activities, including its robust grant program, and guide the strategic leadership of its science and medical programs.

He received his Bachelor of Arts degree in biology from the University of California, San Diego and his doctorate in biochemistry from the University of Wisconsin, Madison.

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Comments
  1. HealthZulu HealthZulu HealthZulu HealthZulu United States says:

    This is a great read. I run a black diasporan health blogazine and one of my columns looked at how psoriasis my be misdiagnosed or mis-surveilled in black and brown skinned people.

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