One of the readers (Jack) posted a comment with some questions about how research in BE is conducted. The answers are too long to fit in a reply box, so I’ll address the questions here.
1. Do you feel that all hospital GI departments are coordinating in an effort to preserve or save all records of patients treated for LGD and HGD, and by all available treatments? I guess that I am trying to ask you if this precious data is being collected by any one particular organization, such as the American College of Gastroenterology, or the National Institutes of Health?
Hospital GI departments do keep records of all procedures, but mainly for clinical use. Keeping records of individual patients by diagnosis and treatment type for research is more challenging.
Depending on the type and amount of data collected, permission may need to be obtained from every patient to store their information in a database. Databases for research need to be secure (password protected, securely backed up, etc) to protect patient privacy and prevent loss of data. This kind of data collection and storage is expensive, so not all departments and programs are able to afford this. To my knowledge, the NIH doesn’t have a BE database. There’s a national database of cancer patients (the SEER network), but it doesn’t include precancerous conditions like BE. There is a national data collection project, the CORI project, which stands for Clinical Outcomes Research Initiative (www.cori.org), that collects some data on endoscopy outcomes. This group has published a few papers on BE, but I haven’t seen anything specifically on types of BE treatment.
2. I was diagnosed with BE without dysplasia, around 3 months ago and have read about a lot of research that has one common theme; “small studies”. This is very discouraging for myself, when cancer from BE has been around so long and is increasing.
Small studies are a problem in many areas of medical research. As common as Barrett’s seems to be, recruiting research patients isn’t always easy. Academic referral centers can attract more patients with BE if they have specialized diagnosis and treatment programs, but for small centers and community practices, BE is a less common diagnosis. For anyone who’s interested in participating in research studies for BE, one place to look for studies is on www.clinicaltrials.gov. This is a searchable website sponsored by the government where clinical trials are registered. Details are given about research studies that are available and the contact information for the researchers is on the site.
3. There seems to be a lack of funding from the NIH for BE research. Do you agree? I believe that we need a campaign for awareness of BE and its potential.
I searched the CRISP database, which is a list of all the NIH funded studies. Using the search term ‘Barrett’s', there are 25 grants that currently fund (at least in part) research into Barrett’s esophagus. Certainly there are more NIH funds devoted to other cancers (colon, breast, etc) and for other diseases, such as heart disease, which affect more people. There’s only so much NIH funding to go around and the budget has been stretched for the last few years for a variety of reasons. Funding for research studies is also available through several of the gastroenterology societies, such as the American Gastroenterological Association, American Society of Gastrointestinal Endoscopy, and American College of Gastroenterology, although these grants are generally smaller in size than NIH grants. Occasionally funding from private donors is available for research and several of the pharmaceutical and device companies also have research funding programs.
An awareness campaign for Barrett’s would be great!
4. Also, all of the currently available treatments for HGD, excluding removal of the esophagus, must carry a bias by the treatment specialist, as these treatment centers invest in the different equipment, for different treatments. Do you think that any of the treatment results are skewed, or not properly reported due to rival technologies?
There are several treatment options for BE. Not all specialists get trained in every type of therapy. Buying each type of equipment is also expensive and not feasible for every academic medical center. These issues make head-to-head comparisons of Barrett’s therapies more difficult. From attending gastroenterology research conferences, it does seem that there is interest in comparing RFA with cryotherapy, so hopefully some of these studies will be up and running soon.
There are commonly accepted criteria for reporting studies in the medical literature. For clinical trials, the rules are called the CONSORT criteria and are a list of issues that must be reported in papers about clinical trials. Most studies also go through the peer-review process, first if they’re being funded by grants, then by the local institutional review board at each hospital, and then also when the manuscript is submitted for publication. The scientific design, results, and reporting are closely inspected, which can help with the reporting process. Clinical trials of drugs and treatments are also required to be registered with clinicaltrials.gov. These things can help make sure results are reported clearly and honestly.
Also, most researchers have spent years training (think 8 years of college and medical school plus 3 years of internal medicine and at least 3 years of gastroenterology training), and get specific training in research ethics, so intentional misreporting shouldn’t be common. For almost all the medical research journals, authors are required to report where all the funding for the study came from.. Authors are also required to report any potential conflict of interest related to the research, such as whether the author is on the board of directors for the company, has been paid to consult for the company, etc. The information about study funding and potential conflicts of interest is usually located at the end of a medical research article. So, for all the reasons listed above, I don’t think there’s a lot of intentional misreporting or skewing of research results.