I first found that I had kidney disease when I was diagnosed with IgA Nephropathy (IGAN) in 2013. IGAN affects a relatively small number of patients and can take many years to progress, so the study of IGAN patients and the development of medication specifically for IGAN has been a slow process. Since 2013, I have been taking 6 or 7 different medications and, without the participation of CKD patients in previous research trials, none of these medications would be available to me.
I have a background in science and find research fascinating. I decided that joining kidney research projects would be a fitting way to repay the debt to those who trialled the medicines I take and, hopefully, it will help other patients in the future. The number of patients with IGAN is small, so patients should be encouraged to join research projects to help to find a cure. Research is needed for many causes and effects of CKD, however, so patients with all kinds of CKD are needed.
Taking part in research projects often doesn’t require much more effort than signing a consent form and allowing the researchers to have access to blood and urine samples and routine test results. Some projects may also involve scans (eg. MRI) or the testing of new medicines. An interesting fact is that some of your samples may be kept in a biobank and can be of use to researchers for years after they have been collected. I have always been very well looked after during trials and you are often monitored more closely than usual, which can’t be a bad thing. The researchers are often keen to pass on their knowledge about CKD to the trial participants and you can learn a lot about your particular type of CKD through talking to them.
I encourage all CKD patients to try participation in research trials. It’s a great way to do our part to repay the efforts of those who have enabled the development of existing treatments, and to assist researchers to find cures for those of us with CKD now, and in the future. Join up!
A picture of the author, Howard Cranmer-Gordon.
