Furthering the Science of IBS: Volunteer for Research Studies
Another very concrete way of contributing to future advances in the IBS field is by volunteering for research studies. There are opportunities in many countries that are designed to study various aspects of IBS. Some are focused on finding the causes of IBS. Others test promising new treatments. Still others address emotional and social aspects of IBS. Studies that may be available range from relatively quick and anonymous online surveys accessible to any person with IBS anywhere in the world with an Internet connection, to tests and treatment for a period of time at a hospital or other research facility. These more complex studies are, for scientific purposes, often restricted to subsets of people with IBS: for example, women only or men only, in a certain age range, perhaps of a certain racial or ethnic group, a certain subtype of IBS or people without specific details in their individual medical history that might affect the study results. Thus, although no one will qualify for every study, most people will qualify for some.
While short, one-time, online, phone or mail studies usually don’t offer any compensation, on-site studies that require a greater time commitment and complex procedures will usually conduct tests and provide any treatment being tested free of charge and sometimes a small payment meant to cover transportation to the study site or the like. When you consider a specific study, it’s important to be aware of any details like this before volunteering. If accepted to participate, you will generally be provided with a form to sign or a web page to agree to, verifying that you understand what is expected of you, your rights to ask questions or to withdraw from the study and the contact information for a person to whom you may direct questions or concerns. This is called “informed consent.”
The IFFGD has a helpful explanation of clinical trials here. The University of North Carolina Center for Functional GI and Motility Disorders has a registry for those who are interested in being contacted about studies in which the UNC is involved. Clinical Trials.gov is a huge database of studies for all types of conditions, including IBS. Although it is run by the U.S. National Institutes of Health, it lists studies all over the world. Many of the other resources linked on the IBS Impact research and links pages occasionally have listings of open studies seeking volunteers.
Here are just 3 IBS studies that recently came to IBS Impact’s attention:
UCLA researchers are looking for volunteers for a study of the effect of writing on symptoms of Irritable Bowel Syndrome (IBS). Eligible individuals will be asked to complete a survey at three time points as well as four 20-minute writing sessions. Participation will take a little over three hours over the course of four months. All portions of the study can be completed online and over the phone. For more information, please call (310)351-9353 or email email@example.com.
UCLA IRB Number: G10-03-013-01A
Expiration Date: November 17, 2011
The Pediatric Pain Program at UCLA is conducting a study on Iyengar Yoga for young people aged 14-26 years with Irritable Bowel Syndrome (IBS). The study involves young people completing a 6-week course of yoga. Participants will also be asked to attend two laboratory sessions at a venue close to UCLA which will involve completing questionnaires, interviews, lab stress tasks and saliva samples and will last approximately 3 hours. All yoga classes will be free, and we will cover any parking expenses. For more information, please call (310) 475-3191 ext. 221.
Protocol ID IRB#11-001204
Tioga Pharmaceuticals Phase III trial of asimadoline for IBS-D seeking both men and women, ages 18-79, at multiple study locations throughout the U.S. For more information, see http://www.bellypain911.com
Even if these specific studies are not appropriate for you or your loved one with IBS, there are many more at the resources listed in this post, and new ones that begin at various times. If you have been wishing for “somebody” to do something– this is yet another way.
EDITED TO ADD: Since this post was originally published, a separate section to list open studies seeking participants has been added to the main IBS Impact site. We encourage researchers to contact us directly with any additions or changes. Please email the IBS Impact listowner/founder or the webmaster at the contact links on the home page of the main site.