Online Clinical Trial: Validation for Gastrointestinal Cognitions (GI-Cog) for IBS or Crohn’s

October 28, 2011

EDITED TO ADD: Since this post was originally written, the specific study described below has ended and is no longer seeking participants. Please see the last paragraph of this post for other resources on IBS studies, or click on the Clinical Trials category on the upper right of the blog sidebar to see all posts on IBS studies.

Researchers at the University of Pennsylvania are looking for participants with either Irritable Bowel Syndrome (IBS) or Crohn’s Disease to fill out a few questionnaires to help in the development of a new measure of GI symptoms and distress. If you have been diagnosed by a medical professional with one of these two conditions, we would be very appreciative if you could take a few minutes of your valuable time to visit our secure website and complete the questionnaires. Participation is completely anonymous – providing your e-mail address is optional. There is no cost for participation, and the study should take about 20-30 minutes to complete. You must be at least 18 years of age, and not currently pregnant. If interested, please copy and paste the link below into your web browser to find out more!

https://www.surveymonkey.com/s/TSB9YFF

IBS Impact’s blog posts for July 26 and August 17  and  October 3 also have information on current clinical trials and related resources.

A page specifically to list studies was recently added to the IBS Impact main site, and we welcome researchers in any country to contact us with information they would like to have publicized. Please use the contact links on the home page of the main site. Our research and links pages also contain general resources that may be of interest to those with IBS who would like to participate in research studies.

 


Increasing Access to Quality Treatment for Irritable Bowel Syndrome (IBS)

October 23, 2011

Irritable bowel syndrome is estimated to affect 9-23% of people in different countries worldwide, conservatively 10-15% in the U.S. alone.  One would think this means that IBS education, treatment and local support systems are are readily available, as they are for many other less common chronic conditions in many communities. In many parts of the U.S., people diagnosed with diabetes or kidney disease, for example, can be promptly referred to clinics, classes and support groups run by hospitals or local affiliates of  large national not-for-profit organizations to teach people to manage their conditions effectively, and staff may also be available to respond to ongoing routine questions and concerns. For other conditions, such as cystic fibrosis and hemophilia, national networks of specialized treatment centers exist where affected children and adults can receive expert care. Sophisticated mechanisms for sharing information about patients seen in those centers have been developed for the purposes of coordinating treatment and research. Over the past few decades, this ability has contributed to increasing life expectancy and quality of life significantly for people with these serious inherited disorders.

Granted, IBS is not as clearly understood scientifically, nor is it life-threatening. However, despite its high prevalence,  many people with IBS anecdotally report difficulties in finding physicians, psychologists and other providers who have extensive, current experience and knowledge of IBS, and who practice with true understanding and compassion for what may be complex needs. As discussed in IBS Impact’s October 9,2011 post, recent research by a team at UCLA has shown that many physicians and primary care nurse practitioners who do not specialize in functional GI disorders do not use the Rome criteria for diagnosis and still do not recognize that IBS is no longer a diagnosis of exclusion.  There are various university medical centers  in the U.S and abroad that have consistently studied IBS to some extent, but this is not true of every teaching hospital in all geographical areas, even some large cities. Centers that solely focus on comprehensive, state of the art patient care, education and research for functional gastrointestinal disorders are few.

There are reasons for hope, as well as much work left to be done by the IBS community toward better access to quality treatment for all who need it. Recently, IFFGD launched its new Digestive Health Alliance site which includes a U.S. and international care locator of providers who voluntarily indicate to IFFGD that they have an interest or specialization in functional gastrointestinal disorders. IFFGD has long provided such lists on request, but perhaps the move online will make these resources more easily available to anyone.  IFFGD asks people with functional GI and motility disorders to suggest additional providers they have found helpful, whom IFFGD will then approach for possible inclusion in the directory. IBS Impact encourages readers of this blog to do so, as entries for many locations remain scant, and the locator will be most useful when it can provide several potential choices to people in each geographical area.

Part of HR 2239, the Functional Gastrointestinal and Motility Disorders Research Enhancement Act, also addresses the issue of centralized, coordinated research and care by calling on the National Institutes of Health to establish “up to five centers of excellence on FGIMDs located at academic medical centers throughout the country” dedicated to functional GI and motility research.  IBS Impact once again urges readers to ask their Members of Congress to support this legislation.

Finally, Douglas Drossman, MD, FACG, co-founder and current co-director of the University of North Carolina Center for Functional GI and Motility Disorders has recently announced publicly that at the end of 2011, he will be leaving full-time patient care and research at  UNC in order to concentrate on several other goals,  including consulting for other clinicians and newer researchers and leading workshops on the biopsychosocial model, patient-centered care and other subjects related to functional GI disorders. IBS Impact thanks Dr. Drossman for his many decades of commitment to people with functional GI disorders and to establishing the field as a legitimate and viable area of research. We wish him and his Center colleagues well in this transition and success in his new endeavors. The IBS community, both people with IBS and professionals, should support him in his new initiatives so that they bear fruit for our community in the years to come.


Representative Jackson of Illinois Co-Sponsors HR 2239 for Functional Gastrointestinal and Motility Disorders

October 17, 2011

UPDATE: HR 2239 did not pass in the 112th Congress. In February 2013, the Act was reintroduced in the 113th Congress as HR 842. Please see the March 2, 2013 post or click on the HR 842 category on the blog sidebar for updated information.

The IFFGD website and THOMAS, the Library of Congress legislative database are now reporting that as of late last week, Representative Jesse Jackson, Jr. (D-IL-2) has signed on as a cosponsor to the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2011. He joins the lead sponsor, Representative F. James Sensenbrenner, Jr. (R-WI-5) and co-sponsors, Representative James Moran (D-VA-8) and Representative Peter Welch (D-VT), and most recently, Representative Elton Gallegly (R-CA-24).  The increased momentum in recent weeks appears promising.

If you are a U.S. citizen who lives in Representative Jackson’s district, plase write or call him to thank him for his support of the IBS and FGIMD community. The 2nd Congressional District of Illinois includes a large part of Chicago’s South Side, and southeastern suburbs

If you are a constituent of Representative Sensenbrenner, Representative Moran, Representative Welch or Representative Gallegly,  please do the same with your respective Representative.

If your Member of Congress is not yet a co-sponsor of HR 2239 and you have not contacted him or her recently to ask for his or her support, please see this previous post from July 6 for links to the bill and  more details on how to do so.  Often, it takes multiple attempts to elicit any interest from legislators, so if you do not receive a response within a few months of your inquiry, periodically try again.

According to the information on THOMAS, it appears that the bill is currently under consideration in the Subcommittee on Health. If you would like to see a list of the members of that Subcommittee, click here and scroll down to the fourth subcommittee listing.

Check back on this blog or join IBS Impact’s Yahoo discussion group for further updates on HR 2239 as they occur.


Representative Gallegly of California Co-Sponsors HR 2239 for Functional Gastrointestinal and Motility Disorders

October 14, 2011

UPDATE: HR 2239 did not pass in the 112th Congress. In February 2013, the Act was reintroduced in the 113th Congress as HR 842. Please see the March 2, 2013 post or click on the HR 842 category on the blog sidebar for updated information.

According to THOMAS, the Library of Congress legislative database, as of several days ago, Representative Elton Gallegly (R-CA-24) is a co-sponsor to HR 2239, the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2011. He joins the lead sponsor, Representative F. James Sensenbrenner, Jr. (R-WI-5) and co-sponsors, Representative James Moran (D-VA-8) and Representative Peter Welch (D-VT) in supporting HR 2239.

The 24th Congressional District of California covers parts of Ventura and Santa Barbara Counties. If you are a U.S. citizen who lives within its boundaries,  please write or call Representative Gallegly to thank him for his support of the IBS and FGIMD community.

If you are a constituent of Representative Sensenbrenner, residing in Wisconsin’s 5th Congressional District, or a constituent of  Representative Moran, residing in Virginia’s 8th Congressional District,  or a constituent of Representative Welch, who is the at-large Member of Congress for the entire state of Vermont,  please do the same with your respective Representative.

If your Member of Congress is not yet a co-sponsor of HR 2239 and you have not contacted him or her recently to ask for his or her support, please see this previous post from July 6 for links to the bill and  more details on how to do so.  Often, it takes multiple attempts to elicit any interest from legislators, so if you do not receive a response within a few months of your inquiry, periodically try again.

According to the information on THOMAS, it appears that the bill is currently under consideration in the Subcommittee on Health. If you would like to see a list of the members of that Subcommittee, click here and scroll down to the fourth subcommittee listing.

Check back on this blog or join IBS Impact’s Yahoo discussion group for further updates on HR 2239 as they occur.


Irritable Bowel Syndrome (IBS) Is Not a Diagnosis of Exclusion.

October 9, 2011

Many people are disconcerted if they are told by their doctors, after minimal or no tests, that they have IBS. This is understandable, for with many other common disorders, abnormalities can readily be found and treated by an alert and thorough health care provider. This is not the case with IBS or other functional GI disorders. The problems in IBS are not obvious and cannot be tested clinically through means currently available to doctors outside of highly specialized FGID research labs. Because of this, the medical profession long believed there was “nothing wrong,” and this led to the notorious idea that IBS is “all in the head.”

However, over the past two decades or so, research in many countries worldwide has established that there is indeed a physical basis for the symptoms of IBS, including dysfunction of the brain-gut axis, visceral hypersensitivity, abnormalities involving the neurotransmitter serotonin, as well as various other possible issues that continue to be studied. About.com’s IBS Guide, Barbara Bradley Bolen, PhD, wrote a series of posts updated this year that summarize, in plain language, some major areas of current knowledge about IBS. Also, in 2010, a joint study by UCLA in the U.S. and McGill University in Canada was published that showed for the first time structural changes in the brains of female study participants with IBS. It is hoped that future research will confirm or elaborate on these findings in beneficial ways.

Thus, it is no longer accurate to claim, as many IBSers do, that nobody knows anything about IBS,that it is only a catchall term for any gastrointestinal disturbance that doctors cannot or will not otherwise diagnose, or that IBS is only correctly diagnosed by ruling out every other condition that might cause similar symptoms. It is true that IBS is extremely complex and not as well understood as would be ideal and that individuals’ symptoms and experiences with IBS vary widely. But there are things that we all have in common that have been known for some time.

The international standard for diagnosis of IBS is the Rome III criteria. (See page 889.) According to Dr. Bolen in a 2009 post, Brennan M.R. Spiegel, MD, MSHS of the V.A.Greater Los Angeles Healthcare System and UCLA wrote for an IFFGD publication that a Rome criteria diagnosis of IBS is about 98% accurate. Some people newly-diagnosed with IBS fear that they may have cancer, and this, or IBS interventions that don’t work, may lead them to seek out many unnecessary tests. However, according to William Chey, MD of the University of Michigan, people with IBS are not at any higher risk of colon cancer than those without IBS. Although clinical protocols for diagnosing and treating IBS vary somewhat from country to country, neither the American College of Gastroenterology’s 2008 guidelines, the National Health Service’s 2008 NICE guidelines for adults with IBS in the U.K. , the 2006 guidelines of the Gastroenterological Society of Australia, nor the IBS page of the Canadian Digestive Health Foundation of the Canadian Association of Gastroenterology advocate extensive and invasive tests for everyone who may have IBS. Rather, they emphasize certain tests that may be indicated for specific subgroups of people based on each patient’s history and the physician or practitioner’s judgment.

Unfortunately, a study by Dr. Spiegel and colleagues at UCLA also shows that gastroenterologists, general internal medicine physicians and primary care nurse practitioners in local communities are much less likely than what the study terms “international gastroenterologists (GIs) who are recognized experts in IBS” to use the Rome criteria in diagnosing IBS or to identify correctly that IBS is not a diagnosis of exclusion. This is a basic unmet need in the IBS community that may negatively affect IBSers’ knowledge of IBS, their ability to receive proper care, and tools to advocate for themselves.

Only qualified medical professionals can diagnose IBS or any other condition. IBS Impact encourages people with IBS and concerned family and friends to familiarize themselves with the Rome criteria and currently accepted standards of care in their own countries, so they can be assured if their health care providers are following best practices.

As self-advocates, we should continue to educate others as to the current science of IBS rather than outdated myths and misconceptions. Without widespread basic understanding of what IBS is and what it is not, it will be more difficult for medical and social advances to move forward. The situation of people with IBS will be much improved when our community can get beyond these issues of fundamental awareness and on to other unmet needs for greater scientific understanding and parity in societal resources with other common medical conditions.


Clinical Trial: IBS: Attachment Style, Catastrophizing and Negative Pain Beliefs

October 3, 2011

The following study at the Mind-Body Digestive Center in New York, NY is one of the more recent ones that appears on the IFFGD website. IBS Impact has directly verified with the Mind-Body Digestive Center today that this listing is still valid and accepting participants.

IBS: Attachment style, catastrophizing and negative pain beliefs

This is an international study of IBS patients in ten different sites around the globe. It is directed by the Mind-Body Digestive Center in New York City. Patients are asked to complete a set of four questionnaires at the time of their initial visit, recorded anonymously without any patient identification.

The goal of this study is to see if there are any universal patterns, or any intra-country differences in the way that the psycho-social measures above correlate with the severity of symptoms in IBS patients.

Contact: The Mind-Body Digestive Center, directed by Charles Gerson, M.D. and Mary-Jane Gerson, Ph.D.
Telephone: 212-712-0494, Fax: 212-787-0983

IFFGD’s full current list of open studies for various functional gastrointestinal disorders includes additional IBS studies located in Chapel Hill, NC, Chicago, IL, Los Angeles, CA, Piscataway, NJ and online, the last under the auspices of the European Gastroenterology Foundation. This list includes one on post-infectious IBS and one on IBS and several commonly overlapping conditions. Scroll down to “Irritable Bowel Syndrome” after clicking this link.

IBS Impact’s blog posts for July 26 and August 17 also have information on current clinical trials.

A page specifically to list studies was recently added to the IBS Impact main site, and we welcome researchers in any country to contact us with information they would like to have publicized. Please use the contact links on the home page of the main site. Our research and links pages also contain general resources that may be of interest to those with IBS who would like to participate in research studies.