Wednesday, January 8, 2014

26 Days of Kawasaki Disease Awareness: Day 8





To celebrate the 4th annual National Kawasaki Disease Awareness Day on January 26, 2014, I will be posting 26 ideas on how you can spread KD awareness in your own community and beyond - one idea per day until the 26th.  

Here are the past days:

Now let's get to today's idea:

Day 8: Participate in a KD Clinical Study

According to ClinicalTrials.gov, a clinical study gains new insights and medical knowledge by researching human volunteers or participants.  In general, studies will focus on treatment, diagnosis, or prevention of diseases.  There are two kinds of clinical studies: interventional and observational.  In an observational study, the researcher observes the participants without interference or influence.  In an interventional study (also known as a clinical trial) the researcher provides an intervention to the participants and then observes the results.  Interventions can be drugs, procedures, or even just a change to the participants' usual behavior.  

Participating in clinical studies raises awareness for Kawasaki Disease by allowing the medical community the ability to make advancements in this area.  While it has been shown that KD has been around a lot longer, it has only been studied for last 40 years.  There is so much we still don't know about this illness; participating in clinical studies can help provide answers to all the unknown questions.  When you volunteer, you help future children who will have KD.  And when we finally get a diagnostic test for KD, many more people will become aware.  

It must be remembered that clinical studies can sometimes carry risks, and those should be considered along with the positives.  For more information about clinical studies in general, check out these resources:

Participating in clinical trials by the FDA.
Clinical Trials by MedlinePlus.
Children and Clinical Studies by National Heart, Lung, and Blood Institute.
Other sites about clinical studies by ClinicalTrials.gov.

There are many Kawasaki Disease studies currently in progress, both observational and interventional.  Here is a list of all the KD studies I know about.  If you have information on others, please send me the information.  

Kawasaki Disease Clinic at Rady's Children's Hospital in San Diego currently has four active KD studies.  This is taken directly from their website
  1. The team is recruiting patients for a clinical trial to evaluate the treatment of children with acute Kawasaki disease and coronary artery disease with atorvastatin. If you are a parent of a child with Kawasaki disease and would like to learn more about this study, please call the Hospital operator at 858-576-1700 and ask for the Kawasaki disease doctor. 
  2. The team is recruiting patients with acute Kawasaki disease and other rash-fever illnesses that come through the Rady Children’s Hospital San-Diego Emergency Department to evaluate a diagnostic test for Kawasaki disease. If you are a parent of a child with Kawasaki disease and would like to learn more about this study, please call the Hospital operator at 858-576-1700 and ask for the Kawasaki disease doctor. 
  3. The team is collaborating with adult cardiologists at the University of California, San Diego and the San Diego Cardiac Center to learn more about the care and monitoring of adults who suffered from Kawasaki disease in childhood. To learn more about this study or to participate, please contact the study team at adultkd@ucsd.edu.
  4. The team is studying the genes of patients with Kawasaki disease and their biologic parents to see how children are genetically predisposed to developing the disease. To learn more about this study and how to participate, emailkdgenetics@ucsd.edu.
The Portman Research Group Kawasaki Disease Program at Seattle Children's Hospital are also conducting numerous Kawasaki Disease studies; one is studying how soy may possibly influence a child's risk for KD and another is studying how the drug Etanercept can help treatment.  To find out more about this program, click here.  

Australia's Kawasaki Disease Foundation has information on a study available in Melbourne, here are the details:

"Interested in helping with Australian Kawasaki disease research? Have you or your child had Kawasaki Disease? Are they aged 6-30 years? Are you able to come to the Royal Children’s Hospital in Melbourne for a single two hour visit, arranged at your convenience? Please contact the study coordinator, Dr Katherine Chen (03 9936 6553 or katherine.chen@mcri.edu.au) for more information. For other studies currently recruiting, check out this KD list by CT.gov."


Are you currently participating in one of these studies? We would love to hear about your experiences! If you are participating in a study I have not listed here, please give me the details and I'll add it.  And come back tomorrow for day 9 of 26 days of Kawasaki Disease Awareness.  











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