Clinical Trials: New Open Studies and Surveys for Irritable Bowel Syndrome (IBS) in the U.S., Canada and U.K. January 2014

January 26, 2014

Below are a few of the studies that have come to the attention of IBS Impact recently through various sources. In some cases, the description below is a summary of major qualifications and details available, and other restrictions may apply.  If interested, please contact each listed sponsor or study site directly for further information.

Imaging Study on the Brain, the Gut and the Microbiome,  UCLA Center for Neurobiology of Stress

“The purpose of this study is to examine brain networks at rest in chronic pain conditions compared to healthy controls.” This is an on-site study, so volunteers must be able to visit the Center, which is a major research institution involved in the study of IBS and other neurologically-based chronic pain conditions. The primary investigator is Emeran Mayer, MD, Director of the UCLA Center for Neurovisceral Sciences, Co-founder of the UCLA Collaborative Centers for Integrative Medicine, and Professor at UCLA’s David Geffen School of Medicine. This study is seeking men and women who are ages 18-55, right handed, not pregnant, have a formal diagnosis of irritable bowel syndrome (IBS), and no significant neurological or psychological medical history. Participation involves one screening visit to the Center, an MRI and a stool sample. Volunteers who complete the study may receive up to $100 and a digital picture of their own brain. For further information, call (310) 206-1758

The above information was received from various social media sources and is summarized from the Center website.

***

Online Survey on IBS and Relationships with Health Providers, Canadian Digestive Health Foundation

This anonymous survey is open to people with IBS in any country. It consists of 32 multiple choice questions and an optional short comment section. No identifying information is asked other than your country.

http://survey.constantcontact.com/survey/a07e87xnhoyhltetaxs/a00dhqjn276t/greeting

The information for the above listing was received via the social media of the IBS Self Help and Support Group

Online Study on the Expression of Emotion and IBS Symptoms, Royal Holloway University of London, United Kingdom.

This study is being conducted by a Royal Holloway University psychology PhD student, Hannah Bowers. She is seeking responses from people with and people without IBS in any country. The survey consists of a 102 question series of multiple choice questionnaires with estimated completion time of 15 minutes. Some demographic information is asked, such as age, sex, ethnicity, level of education, employment status, and country of birth, but name is not requested. Respondents have the option of providing an email address in order to enter a random drawing for a 25 pound gift voucher for their choice of Amazon.uk or Topshop/Topman, or to be notified of followup surveys.  The questionnaires and contact information for both Ms. Bowers and her RHUL supervisor can be found here:

http://edu.surveygizmo.com/s3/1441380/rhul-ibs

The above listing was summarized from information posted on the website of the IBS Network, the U.K. national charity for IBS, as well as from the survey itself.

While IBS Impact attempts to highlight a diversity of available opportunities, this is not intended as an exhaustive list. Previous posts on open clinical trials for IBS can be found by clicking the clinical trials category in the blog archives on the upper right sidebar of this blog. We also have a page for IBS studies on the main IBS Impact site. The research and links pages and the July 26, 2011 post provide additional general resources.

We welcome researchers affiliated with academic, medical or pharmaceutical entities, or reputable organizations representing IBS or related or commonly overlapping conditions, to contact us directly with additional studies they wish to be considered for posting or if an existing listing needs to be updated. Contact links for the founder/listowner and the webmaster can be found on the home page of the main IBS Impact website.

IBS Impact makes these study announcements available for general information, and encourages its members and site visitors to make their own individual, informed choices about their potential participation in any study.  IBS Impact, as an entity, is not directly affiliated with any research sponsor and receives no funding from any source for studies or links we feature on this blog, the main site or social media.


NPR Responds Positively to Advocacy on Coverage of Gates’ Negative Comment About IBS

January 20, 2014

The expected release earlier this week of a new memoir by former U.S. Secretary of Defense Robert Gates elicited widespread coverage in the national print and broadcast media. These articles and interviews have often highlighted an unfortunately less than complimentary passage from the book about irritable bowel syndrome. According to various news sources, Gates wrote about a request from Senator Harry Reid that the Department of Defense fund IBS research, “With two ongoing wars and all our budget and other issues, I didn’t know whether to laugh or cry.”

On January 12, the IBS Impact founder first heard this anecdote recounted on National Public Radio’s “All Things Considered, Weekend Edition.” NPR’s initial report (Scroll down to segment 3 on the linked page for archived audio) described Gates’ comment as one example of several “parochial interests” that legislators were bringing to then-Secretary Gates. Although the reference to IBS was brief and not the focus of the broadcast segment, and NPR cannot be faulted for reporting Gates’ opinion per se, it appeared from the tone of the report that IBS was indeed a trivial and irrelevant subject unworthy of the then-Secretary of Defense’s attention. Given that those who served in the two wars it was former Secretary Gates’ responsibility at the time to oversee, are disproportionately affected by functional gastrointestinal disorders like IBS, this seemed to be an inaccurate implication to convey to listeners.

On January 13,  the IBS Impact founder, writing as an individual, submitted a polite comment to “All Things Considered,” including a reputable link to the International Foundation for Functional Gastrointestinal Disorders (IFFGD)’s work on veterans’ issues and stating in part:

As Secretary Gates’ memoir is not yet released, I can’t comment on the context of his conversation with Senator Reid about irritable bowel syndrome as you reported. However, as a person with IBS, advocate and educator in contact with leading professionals in the field, I can say that IBS is not a “parochial interest” irrelevant to the military. IBS is the most common functional gastrointestinal disorder, affecting 10-20% of the general public, many moderately or severely. Peer-reviewed academic research shows that Gulf-era veterans are affected at even higher rates. As of 2011, IBS has been considered presumptively (automatically) service connected for the purposes of VA disability benefits, and IBS currently does receive Department of Defense research funding that must be reauthorized each year.

After alerting IFFGD to the situation, the next day, the IBS Impact founder also sent brief tweets stating some of these facts to the Twitter accounts of “All Things Considered,” the host, and the reporter, not knowing what, if anything, to expect. To NPR’s credit and her own, politics reporter Liz Halloran responded promptly that a followup story focusing on veterans and IBS was scheduled  for January 16. That article, “Doctors Say Reid Request for Bowel Research Money Is No Joke,” has received largely positive comments from online readers.

Douglas Drossman, MD, FACG, founder and co-director emeritus of the University of North Carolina Center for Functional GI and Motility Disorders,  founder and president of the Rome Foundation, and board member of IFFGD, who is quoted extensively in the NPR followup, also posted a fuller response on his Drossman Center website entitled, “IBS Is No Joking Matter for Veterans and Others With This Condition.” Both articles have since been circulating on social media, attracting the attention of others in the IBS community as well as educating the general public about IBS and about its impact on military veterans and service members in particular. (See our August 12, 2011 post for information on functional GI disorders and service connected disability and the November 11, 2013 post for a general overview of current veterans’ issues and resources.)

The events described here are a heartening example of how sometimes even simple communications that take just a few minutes of time can unexpectedly yield results. IBS Impact thanks Liz Halloran and NPR for their positive response, despite the fact that health issues are not Ms. Halloran’s usual beat. For a previous post on how to advocate for IBS in the media, see the November 6, 2011 post.

IBS Impact also recognizes Dr. Drossman and IFFGD for their continued leadership in representing reputable scientific knowledge about IBS and the needs of the functional GI community. It is hoped that the advocacy action described in this post and NPR’s response have a ripple effect with other people with IBS and other media sources as former Secretary Gates’ book enters circulation.

Besides educating the general public, accurate, useful coverage of IBS may also prompt those who struggle, veterans and civilians alike, to reach out to the resources that are available to us, which are not always well known or easy to find. All of these are potentially very positive outcomes from what began with as a negative comment on the part of Secretary Gates.


Clinical Trial: Phase II Seldar Pharma Investigational Medication for IBS-D

January 13, 2014

This study was received from the Digestive Health Brief, an electronic newsletter of the American College of Gastroenterology and summarized from the ClinicalTrials.gov listing for ASP 7147. ClinicalTrials.gov is an online database of the U.S. National Institutes of Health that indexes most clinical trials involving human subjects in the U.S. and many other countries throughout the world.

This Phase II study for Seldar Pharma investigational medication, ASP 7147  (300 mg. twice daily for 4 weeks or placebo) is seeking men and women ages 18-75  who have irritable bowel syndrome with diarrhea, and who are able to communicate with investigators and provide written consent.

Excluded from participation in this specific study are those with IBS with constipation (IBS-C)  or mixed/alternating type (IBS-M, sometimes known as IBS-A )  and/or untreated lactose intolerance and/or history of alcohol or drug abuse in the past two years,  and/or other clinical trial participation in the previous month and/or or “other significant disease or condition that may interfere with trial completion.”

The trial involves thirteen sites in nine U.S. states: Arizona, California, Florida, Massachusetts, Missouri, Nevada, North Carolina, Ohio and Texas. Most began recruiting volunteers in November 2013, although some are not yet recruiting. The study is expected to complete data collection by December 2014. For further information, see the listing linked in the first paragraph of this post.

Previous posts on open clinical trials for IBS can be found by clicking the clinical trials category in the blog archives on the upper right sidebar of this blog. We also have a page for IBS studies on the main IBS Impact site.The research and links pages and the July 26, 2011 post provide additional general resources.

We welcome researchers affiliated with academic, medical or pharmaceutical entities, or reputable organizations representing IBS or related or commonly overlapping conditions, to contact us directly with additional studies they wish to be considered for posting. Contact links for the founder/listowner and the webmaster can be found on the home page of the main IBS Impact website.

IBS Impact makes these study announcements available for general information, and encourages its members and site visitors to make their own individual, informed choices about their potential participation in any study.  IBS Impact, as an entity, is not directly affiliated with any research sponsor and receives no funding from any source for studies or links we feature on this blog, the main site or social media.


IBS Impact’s Top 25 Countries and Top 10 Posts of 2013

January 2, 2014

For this first week of the New Year, IBS Impact is once again participating in the common December-January blogger tradition of highlighting popular posts and interesting blog statistics from the year just past.

This blog reached readers in 88 countries and territories during 2013, and over 100 in the two years that WordPress has made country statistics available to individual blog owners. While, predictably, most of the nations in the top 10 are ones where English is an official or major secondary language, our total blog hits span every continent, underscoring that IBS is a global problem, not the common stereotype of it as a nuisance disorder caused by overindulgent North American diets and lifestyles. A list of the top 25 better reflects the diversity of countries of origin represented. It is hoped that the vast majority are legitimate visits, even from those who might not have been searching specifically for information about IBS, and not simply potential spammers. In order, the countries are:

1. United States

2. United Kingdom

3. Canada

4. Australia

5. India

6. Ireland

7. Netherlands

8. France

9. Philippines

10. Poland

11. Germany

12. Italy

13. Singapore

14. New Zealand

15. Spain

16. Sweden

17. Japan

18. Pakistan

19. Norway

20. Turkey

21. South Africa

22. Brazil

23. Saudi Arabia

24. Denmark

25. Israel

Below are the top 10 individual posts that received the most hits during 2013. Half of them were first published in 2011 or 2012. However, they continue to attract attention because they address topics that are of ongoing concern to people with IBS. Perhaps longtime readers can refresh their memories and newer readers will discover something interesting and useful. In order, the posts are:

1. Functional Gastrointestinal Disorders/IBS Considered Presumptive Service-Connected Disabilities for U.S. Gulf War Veterans,  August 12, 2011

2. 15 Common Misconceptions That Shouldn’t Exist about Irritable Bowel Syndrome (IBS), November 8, 2013

3. Irritable Bowel Syndrome (IBS) and a Debate on “Can’t Wait” Cards,  November 25, 2012 Please note that the blog originally linked in the above post as a basis for discussion no longer exists on WordPress.com. However, the ideas raised and the invitation by IBS Impact for readers and the IBS community to continue to discuss related concerns are still valid.

4. Proposed DSM-5 Criteria May Unfairly Label Physical Conditions as Psychological Disorders, December 17, 2012

5. Public Restroom Access and Irritable Bowel Syndrome (IBS), February 21, 2012

6. Food Poisoning and Post-Infectious IBS, August 5, 2011

7. Restroom Access Act (Ally’s Law) Updates in Maryland and Maine, May 10, 2013

8. ACTION ALERT: Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2013 (HR 842)  March 2, 2013  Please also click on the HR 842 sub-category in the sidebar on the right side of the blog to see all updates on this legislation.

9. April is Irritable Bowel Syndrome Awareness Month 2013,  April 1, 2013

10. Guest Post for IBS Awareness Month: A Lesson Learned From A Young Person with IBS, April 8, 2013

This blog was begun in July 2011, a few months after the launch of the main IBS Impact website, and a bit over a year after the inception of IBS Impact itself. It is intended as a supplement to the many resources on our main site, one that can be updated relatively quickly with time-sensitive news, advocacy and clinical trial opportunities, as well as providing well-researched, scientifically reputable information on IBS and commentary on broader issues affecting the IBS community that may not be widely discussed on other sites. It is meant to be useful to a broad readership: people with IBS and related conditions, both those who may have lived with IBS for some time and those with recent onset or who are new to IBS sites online,  family members and friends, health care and human service professionals who may interact with us, and the general public. We are pleased that it continues to fulfill this role.

IBS Impact wishes everyone a happy, healthy, prosperous and productive New Year and looks forward in 2014 to advances in awareness, advocacy, research, treatment and community support systems that benefit the worldwide IBS community.