In my next life I’ll be a scientific researcher:  The CARRA Conference

I diligently opened up my e-mail one evening and to my surprise, there was an invitation to represent CAPA at the third annual Pediatric Rheumatology Research Annual Scientific Meeting. The conference was presented by CARRA (Childhood Arthritis and Rheumatology Research Alliance) and scheduled to be held in Denver, June 1-3, 2007! Having had JIA (Juvenile Idiopathic Arthritis) since the age of 12, research on this topic is of major interest to me.

I lifted myself out the creaky swivel chair and called down the stairwell to my husband. “Do you want to go to Denver with me?” Anticipating a long silence, and a “What for?” response, I began sauntering back to the computer terminal. Instead, there was a flurry of motion, a gallop to the bottom of the stairwell. “Denver! Did you say Denver? When do we leave?”

I had never seen a response like that to any of the conferences I had gone to in recent years. But I was talking to a railroad buff, and apparently Denver and its vicinity in Colorado is the home to numerous Narrow-Gage Railways. So, with much excitement on both our parts, but for very different reasons, we headed off to the foothills of the Rockies and the American Mid-West.

CARRA is a North American organization of Pediatric Rheumatologists who have joined forces to answer critical clinical research questions. They have created a multi-centered network of investigators with the goal of increasing the number of children who can participate in research studies, thereby reducing the time it takes to complete their studies. Since childhood arthritis is the leading cause of acquired disability, questions such as “What are the most effective treatments for a positive long-term outcome?” “What are the origins of the disease?” and “How can joint damage be prevented?” are all clinical issues that these researchers plan to address.

Perhaps the most immediate and startling revelation to me at this scientific conference compared to other conferences I have attended, was the nature of the pediatric researchers. A high percentage of pediatric rheumatologists attending this conference were women and most of them were relatively young. Of course, when I thought about it, it’s possible that women would be attracted to the pediatric aspect of this medical discipline since they may have a fair amount of experience with children in their personal lives.

The conference gave the researchers an opportunity to present the progress being made in their research studies and even more importantly, it was an opportunity for them to network with other researchers who might be interested in helping them pursue future investigations. As a Canadian, I was very impressed with the high number of pediatric rheumatologists who were taking lead roles in various research activities. Canadians were very well represented at this conference.

One of the most interesting presentations and discussions centered on the CORRONA (Consortium of Rheumatology Researchers of North America) system by Joel Kremer. Currently, most researchers use randomized control trials in their research, where a hypothesis is presented and is tested. The problem with this method is that perhaps the hypothesis is wrong, or is too narrow or is tested on the wrong population. It also takes a long time to acquire enough participants to complete the trials (this is one reason the pediatric rheumatologist researchers have created CARRA). The CORRONA system, however, is registry-driven research, where the researchers who sign on create a patient registry or data base with information such as joint counts, adverse events, costs, MD visits, patient co-morbidities, hospitalizations, surgeries, disabilities, quality of life, time lost from work, etc. that can be tracked. In Europe, Sweden has a government-funded database on every citizen. However, in North America, the researchers would need to rent hours of access to the database. One of the most interesting aspects of the CORRONA system is that the patients enrolled in this database would have access to their own information and progress. (Apparently, the patients really like this.) Of course, there are drawbacks. For example, some physicians may rate joint tenderness differently than others and there is always the issue of personal privacy when databases are developed, although the experts say this is carefully monitored and protected. It makes me wonder if through advances in data collection we might be entering the “Brave New World” where the state eventually controls everything, even the gene pool. The positive implications, however, may out way the negative, particularly in relation to obtaining data for approval of new therapies or medications.

The specific research that I was privileged to hear about at the conference is currently in progress and cannot be elaborated upon in this article. Suffice it to say there are numerous studies on Juvenile Idiopathic Arthritis, Lupus, Uveitis, Spondiloarthropathies, Juvenile Dermatomyositis and studies on various medications as well as plans to enhance adverse event reporting. One completed study on Quality of Life that is currently in the process of being published involves a questionnaire called “SMILEY”, “Simple Measure of Impact of Lupus Erythematosus in Youngsters” created by Dr. L. Nandino Moorthy. It includes 26 items with parallel child and parent versions and focuses on the effect of activity limitations on a child’s self image, his/her fears of the future and social aspects affected by SLE. The responses are in the form of a “five-faces” scale denoting different expressions. It is a self-reporting tool for children from age 8 to 18 or can be used with an adult recorder for children aged 2 and beyond. An example question is “How does having lupus make you feel?” Apparently, SMILEY is easily scored and can be used repeatedly to monitor how a child is emotionally coping with his/her disease and his/her overall well being. This questionnaire will likely become an important tool in both clinical and research settings providing valuable quality of life information for rheumatologists who see their young patients over a period of many years.

During the Breakout Sessions, participants were able to enter discussions more freely because of the smaller group settings. I was very pleased to see that the Friends of CARRA, a group of parents/patients/friends/supporters have, as of this year, been invited to designate one person to sit on each of the various research committees to contribute the patient perspective. I participated in two different Breakout Sessions. It was clear that a few “old school” researchers were reluctant to involve a “patient” in the discussions, but most were very welcoming and even appreciative of a differing perspective. Regardless of the reception, I felt that I had been invited to provide a patient perspective and that’s exactly what I did. I even suggested a research project that I would like to see someone do. (Our Friend of CARRA nearly fell off the chair at this point, but I hope the example will set the parameters for future Friends during these discussions.) While my research suggestion was not followed up, we did discuss the reasons for it and one rheumatologist explained the feasibility problems at his pediatric center. Regardless of whether that research is done, the seeds for future treatments and possibilities have been planted.

To say I enjoyed this conference is putting it mildly. In my next life, I think I shall have to become a scientific researcher too.

Meantime, my husband was also on “Cloud 9” in railway heaven. We went up Pikes Peak to 14,100 feet on the Cog Railway and for me, the view from the peak epitomized the goals and aspirations, and the heights and depths of the CARRA Conference.