Clinical Research Studies: On being a guinea pig

*Note: This blog post is about my personal experience with clinical trials & research studies.

Medical research has been part of my vernacular almost as long as I can remember. Growing up, I remember my mother routinely taking part in research studies, whether it was a clinical trial or a simple release of her medical records and lab results. My mother was being treated at a teaching hospital - one that was and still is involved in cutting edge research. Because of this, she was followed for her diagnosis of Hypertrophic Cardiomyopathy (HCM), in the hopes of better understanding the disease and maybe one day creating better treatments as well. For the same reasons, as a young child I was also followed at the local children’s hospital, although I wasn’t actually diagnosed with HCM until I was 25.

As I grew up, I was soon able to participate in research studies myself. There was never a doubt in my mind about participating in these studies. HCM had killed so many in my family and would go on to kill many more. So, if there was any way to help advance the medicine, and learn more about the condition or drugs that might work, I wanted to be the first person in line with my hand in the air. I wanted to be a guinea pig.

In my college years, it was still unknown which mutated genes caused HCM (then known as Idiopathic Hypertrophic Subaortic Stenosis- say that 10 times fast).  Since then, more than 1,400 gene mutations have been found to cause HCM, and advances in organ transplantation and pharmaceuticals is truly astounding.

When my mother was first diagnosed with HCM, she was discovered to be in congestive heart failure. We were told that at the most, she might live just 5 more years. Luckily, through the use of new drugs and other treatment options, the number of years was extended. With current treatments today, people with HCM can expect to live just as long as the “normal” unaffected population. Whether through heart transplants, lifestyle changes, or drug therapy, HCM patients can actually plan for a future. They can think about working, having a family, and growing old.

This is what medical research does. It provides hope for a future.

I don’t know how many medical trials I have been involved with at this point. I simply stopped counting.  But when the next one comes along, my hand will be in the air again. I hope both of my children will also choose to be involved.  They participated in studies when they were very young, but now that they are 11 and 14, I feel it should be their decision. And with anyone, it’s not always an easy one. Sometimes study participation involves time for appointments, blood draws and interviews. Sometimes it’s simply signing a form so that part of your medical records can be shared. But whatever else it is, it is hope. Hope for yourself, for your family, and for future generations who will battle this disease just like we are today.