Toward this goal, CARRA is developing a culture of research. “We know that there is not a sufficient evidence base right now to say for sure what the best care is for children with these diseases. It’s only when a group of people decide to treat in a certain way that you can gather the data to figure this out,” Dr. Schanberg says.
Dr. Ilowite adds, “We would like to have cures for some of these diseases affecting children. I think in the next few years we will have agents to control the diseases, and that it is realistic to expect some cures. We strive to cure.”
Mary Desmond Pinkowish is a medical journalist based in New York.
References
- Giannini EH, Wallace CA, Brunner HI. Barriers to participation in clinical research within the US pediatric rheumatology community. Arthritis Rheum. 2002; 46 (suppl.):S310. Abstract #779.
- Schanberg LE, Sandborg C, Barnhart HX, et al. Premature atherosclerosis in pediatric systemic lupus erythematosus: Risk factors for increased carotid intima-media thickness in the atherosclerosis prevention in pediatric lupus erythematosus cohort. Arthritis Rheum. 2009;60:1496-1507.
The CARRA Research Coordinator Network
Kelly Mieszkalski knows that the CARRA research coordinators at individual sites wear a lot of hats. Each person may be involved in as many as 10 to 12 clinical trials (not all of them for CARRA) and almost certainly has other duties within the clinical practice or office where they are based.
“We know that they ask themselves, ‘Will I work on the study that pays really well per patient enrolled, or the study that pays less but is a really meaningful project?’ ” she says.
One task covered as part of the CARRAnet grant is to provide comprehensive site support with ongoing training and education. Mieszkalski says that one notable obstacle to smooth operation of CARRA research at individual sites is turnover among study coordinators. “Doctors stay, but research coordinators come and go. Frequently it’s the study coordinator who gets the study up and running—and running efficiently,” she says. Consequently, one goal of the CARRA research coordinator network is to promote professional development and increase job satisfaction among these key personnel. “When you have a lot of turnover, the study is not going to run well at your site,” she says.
The stakes are high, according to Mieszkalski. “An experienced study coordinator is one of your best advocates for recruiting patients into studies. He or she can help the participants feel like they’re making a difference while helping to make their trial or registry experiences be positive ones,” she says.
