Registries for Irritable Bowel Syndrome (IBS) Research Volunteers Created in the United Kingdom and Australia

September 30, 2017

In recent weeks, IBS Impact has learned that two separate entities, the County Durham and Darlington NHS Foundation Trust in the United Kingdom, and Macquarie University Faculties of Human Sciences and Medicine and Health Sciences in Sydney, Australia have established new, secure registries for those who are interested in volunteering for research studies.

The Macquarie registry is for all adults with any functional gastrointestinal disorder. IBS is the most common FGID. Information can be found here.  Macquarie University Functional Gastrointestinal Disorder Research Volunteer Registry.

The County Durham and Darlington NHS Foundation Trust registry is specific to IBS and is also limited to adults at this time. According to a September 29, 2017 announcement on the NHS National Institute of Health Research site,  it is part of a five year study to encourage those with IBS to be aware of and seek care and to increase participation in clinical trials. If the registry succeeds, the hope is to expand it nationwide in the future. The official website for the service, to be known as Contact ME-IBS, is linked here.

In each case, placing one’s name and contact details on the registry does not guarantee that one will be contacted or be eligible for any specific research study, as requirements for volunteers vary with each individual study. Similarly, there is no obligation to participate in a specific study if contacted. It is simply an expression of possible future interest, allowing researchers to be aware of and efficiently reach out to potential participants willing to be recruited within the IBS/functional GI disorders community.

IBS Impact welcomes 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 registries, studies or surveys they wish to be considered for posting. A contact form is available on the main IBS Impact website.

IBS Impact makes these announcements available for general information, and encourages its members and site visitors to make their own individual, informed choices about their potential participation. Additional studies can be found by clicking on the Research– Clinical Trials sub-category in the right sidebar of this blog on our main website IBS studies page. Please be sure to check the date at the top or bottom of a given post, as many posts from this blog remain visible in search engines for several years, and studies stop accepting volunteers or conclude the trials after a period of time. IBS Impact, as an entity, is not directly affiliated with any research sponsor or organization and receives no funding from any source for studies, surveys or links we feature on this blog, the main site or social media.

Updates to the IBS Main Website, September 2017

September 16, 2017

IBS Impact has recently completed the latest round of updates to many pages of our main website,  IBS,

The home page, advocacy page, research page, IBS studies page, and IBS and children page all have additions or updates of content or links, or deletions of outdated links in the last three months. The United States, United Kingdom, and Australia are all represented in these most recent changes, with several more countries represented in existing material.

Readers interested in the most recent news, events, clinical trial and advocacy opportunities, and articles between main site updates, may follow this blog or our Facebook or Twitter feeds (links found on the lower right sidebar of this blog and in the light blue footer sections below each page of the main site).  Each has slightly different information on an ongoing basis. Regardless of one’s interest in IBS, whether personal or professional, most users should find useful and interesting material and links. The current site reflects resources in six countries which are among the top sources of hits to the site and this blog, with occasional references to several others.

Because of the redesign and transfer of the site to new hosting twice in 2015 and 2016, some links embedded in older posts on this blog or search engine results relating to IBS may result in error messages, but you should still reach the site itself. If so, please use the navigation links at the top of the site to reach the desired subpage.  No information that is still currently useful has been removed from the site, although in some cases, the location has changed. Only outdated details and occasional defunct links for which there is no replacement available at this time have been deleted. The date of last update is indicated at the bottom of subpages that change periodically.

Please feel free to check out the site here. Our goals with the website, blog and social media are to provide a varied range of current, scientifically accurate, reputable information and resources to people with IBS and their families and friends, and to encourage informed choices, proactive self-advocacy and worldwide public awareness of IBS, and the unmet medical or social needs many of us face as a result of IBS.

IBS Impact as an entity, is not directly affiliated with any other organization, site, or research sponsor and receives no funding for the information we post on the main website, this blog or our Twitter and Facebook pages. We do welcome constructive collaboration and value the many individuals, websites, organizations,  and clinical and research entities who continue to support, encourage and amplify our efforts in various ways to benefit the cause of IBS awareness and advocacy worldwide.

Comments, suggestions, corrections of outdated links, article submissions, and clinical trials or surveys by researchers affiliated with academic, medical, or pharmaceutical entities or reputable evidence-based organizations representing IBS or commonly overlapping conditions in any country are all welcome and will be thoughtfully considered. A contact form  can be found on the main site, or comments can be left on this blog.  Thank you to all of our readers and social media followers for your interest and participation.