Sjogren's Syndrome and Clinical Trials

Image mine. 

A friend of mine is writing an article about how patients view and participate in clinical trials. She asked me several questions, and I thought I would share them and my answers with you. How would YOU answer these questions? Add your answers in the comment section below and I will forward your responses to the author.

1. As a patient, what do you think of clinical trials overall? How do they factor-in to your life, if at all? Have you participated in a trial? Why or why not?


I think that overall, clinical trials are an important part of the scientific method to prove or disprove efficacy of medications and treatments. I support them wholeheartedly. While there are risks, I can't imagine how else new drugs would be developed and safely prescribed. That being said, I have never been approached by any medical staff regarding a clinical trial. If I would have been approached, my inclination would have been to participate. 


2. Have you seen conversations in online communities about clinical trials? Do people in your online health community discuss clinical trials? If yes - what is the general consensus? If no - why do you think this is?

I attempt to initiate discussion about clinical trials on my blog, since I receive daily updates from several sites similar to  Medpage Today which routinely reports on ongoing studies and clinical trials. An example: I read with interest recently about a trial that compared CellCept and Azathioprine in the treatment of Lupus nephritis - since Lupus and Sjogren's syndrome is so closely related. News of these trials and other studies with existing medications and treatments are received enthusiastically by my readers. However, they're not extensively discussed because my readers and other members within my particular community are more interested in what is currently available for them. They are thinking in the "here and now", rather than discussing a potential drug in the pipeline which may or may not fail trials and may or may not be available to them in five, ten, or fifteen years from now.

3. How would you like to see clinical trials evolve in the near future? Are there any ways, in particular, that you'd like clinical trials to change that would benefit you and your health community? (Access, technology, more incentive, more awareness, more info, etc)

I think awareness is an enormous issue. I do believe that my readers would be more interested in these trials if they appeared less "secret", or "mad scientist" - like. Another awareness issue is the language used by researchers in discussing these studies. For those not involved day to day in the research arena, terminology and language used is intimidating and doesn't provide clear information. When non-medical or non-study writers attempt to simplify the language, at least in the few articles that I have read, it's abundantly clear that these people have no clue what they are writing about, so the information that does reach the public is sometimes just not accurate. Information targeted at the general public needs to be written by people within the study group.

Access to participating in these studies is also an issue. Specifically for my disease - Sjogren's syndrome - awareness is so limited that many health care practitioners can't even pronounce the disease, much less advocate for study participants. I know that the Sjogren's Syndrome Foundation has just announced that a new research center, the Oklahoma Medical Research Foundation (OMRN) has received a five-year $7.8 million grant from the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) at the National Institutes of Health. The funds will be used to create the Oklahoma Sjogren's Syndrome Center of Research Translation which will focus on developing new ways to diagnose and treat Sjogren's. I look to this center and others like it to drive the continuing push for Sjogren's and autoimmune disease research to increase the presence of clinical trials relevant to my disease.

4. Anything else you think I should include in this brief article that will speak to the patient experience?

After speaking to my sister, who works for a large pharmaceutical company as a study coordinator, I'd like to bring up two additional points: First, with the slump in our economy, more patients are opting to live without health insurance. So studies which provide participants medications free of charge are seeing an uptick in participation, according to my sister's data. I'm wondering if additional incentives would continue that increase.  

Secondly, patients need to be aware of a Federal law that requires all private and publicly funded studies to be available for review on this site: www.clinicaltrials.gov. Here, patients can search for and view ongoing trials currently recruiting participants for specific diseases in specific locations around the world.

I took a brief look at the clinical trials currently recruiting participants on the above site and actually was surprised by the number of active trials in Sjogren's syndrome. Of course, patients should never enroll in a study without their doctor's participation in that decision.

I'm thinking that it would be interesting for me to keep abreast of current Sjogren's and autoimmune disease related studies that are recruiting for patients.

So now it's your turn. Have you ever participated in a clinical trial or study specific to Sjogren's syndrome? How do you view clinical trials? How would you like to see changes within the current framework of clinical trials?