Be a Part of Psoriatic Disease Research
As a mom to a kid – well, not exactly a kid anymore at age 19 – who has psoriasis and psoriatic arthritis, I’m always looking for new research on how genes contribute to disease. My son was diagnosed at age 4 with psoriasis and age 5 with psoriatic arthritis. His dermatologist kept asking, “Who in your family has it?” At that time, I had no clue. But three years later when I started having symptoms of each, the answer was crystal clear. I soon found out that psoriatic disease runs on my father’s side.
Questions spur research
Ok. So, now we have the family connection. But why is it that my son’s disease is so much worse than mine? Sure, I’ve definitely had some bad flares, but I’ve never reached the same severity as my son. And why did he get it at age 4, and mine didn’t show up until I was in my 20s? And what are the chances my son will pass along the genes to his future kids?
So many questions! Good thing there are psoriatic disease researchers out there working to find the answers to these genetic questions and so many more. But here’s another question: What can we do to help?
Getting research off the ground
In 2017, the National Psoriasis Foundation (NPF) gave $2.49 million in research grants and fellowships. According to Michael Siegel, Ph.D., Senior Vice President of Research and Clinical Affairs, NPF looks for promising studies to help fund in order help researchers take the crucial first step in getting these projects started. Many projects that NPF funds are often high risk. However, NPF sees the potential in the high reward and believes the investment is worth it.
Dr. Siegel said one trend in research is biomarkers. For example, researchers study genetic signatures to try to predict the likelihood of a person developing psoriatic disease. Biomarkers may also be used to determine the how severe the disease might actually become in a patient. The hope is that one day, a blood test can check for these biomarkers and doctors can have a better idea of what treatment will work best for each patient.
I like to consider myself a science junkie, even though I rarely use science in my 9-to-5 day job. I’m nowhere as smart as the scientists involved in research, but that doesn’t mean I have to sit on the sidelines. All psoriatic disease patients, as well as those without the disease, can still help further research.
Dr. Siegel points some ways to get involved:
- Citizen Pscientist: Participants answer online survey questions in a global online research network to provide researchers with new leads in a global online research network. Patients can even see the data and discuss with other patients. Some topics include disease triggers, age of onset, most common locations for psoriasis plaques, and where psoriasis or psoriatic arthritis is more bothersome.
- Corrona Registry: Patients can work with their dermatologists (who are enrolled in the program) and provide data to determine the long-term safety and effectiveness of medications for psoriasis. Find out how to get started with the registry.
- Clinical Trials: Patients can be considered for clinical trials if they meet the requirements in a particular study. NPF has a referral service for clinical trials.
- NPF Involvement: Dr. Siegel said that just getting involved with the Foundation through any of the many available channels will provide valuable patient feedback about living with the disease that can help researchers in the field. In addition, he said that monetary donations are critical to keep funding important research, and donating to an organization like NPF that puts research as a top priority is crucial to getting important research projects started – especially projects that are focused on finding a cure.
Does your psoriasis skin feel out of control? How are you managing?