Psoriasis patient data collection
In 2009, Congress approved $1.5 million in initial funding for the government to begin collecting public health information on psoriasis and psoriatic arthritis.
The data collection effort, housed at the Centers for Disease Control and Prevention (CDC) in Atlanta, will collect information about people with psoriatic disease, the other diseases they may have that are connected with psoriasis, and how their psoriasis changes over time. The National Psoriasis Foundation and psoriasis advocates are working to ensure continued funding for the psoriasis public health data collection. You can help »
Why is data collection important?
While clinical trials provide valuable information about specific treatments, scientists need public health data so that they understand underlying questions about the disease based on the population—not on one group trying one treatment.
That's partly because trials studying one specific treatment usually seek to enroll a group of similar patients who don't have many complications that could muddy the results of the study.
In contrast, the data collected by the CDC include not only information about disease levels and background, but also about other chronic conditions, like heart disease, depression or diabetes, and information about environmental and lifestyle factors. More about psoriasis comorbidities »
Collecting data over time—even years, is important so that scientists can learn about the long-term risks of the disease, as well as look for commonalities that will help them understand the causes of psoriasis.
What will we learn?
Researchers and doctors hope the psoriasis data collection will help them understand:
- How often chronic conditions like diabetes and heart disease are associated with psoriasis;
- How early intervention may affect the onset of psoriatic arthritis or chronic conditions associated with psoriasis;
- What environmental or lifestyle factors might contribute to or change psoriasis and psoriatic arthritis; and
- How factors like age, race or gender may interact with the diseases; and
- Why factors like disease severity, flares, and response to treatment can differ from one patient to the next.
Understanding these factors will help identify new research possibilities and bring us closer to a cure.
Remember, your help as a patient, or as someone who cares about psoriasis, is vitally important to keep Congressional funding for this work. To help, contact your member of Congress today and let them know how important continued funding for psoriasis data collection efforts is to you.