With World Digestive Health Day just around the corner on May 29th, we look at how technology and the social media networks can also be an effective ally for researchers of coeliac disease and the patients they seek to help.
From Twitter to the Apple ResearchKit to the multitude of mobile apps on the market,in previous posts we have looked at ways that technology and social media can encourage medical information sharing for the benefit of more and more people around the world.With World Digestive Health Day just around the corner (May 29th) it is therefore the perfect time to look at how technology and social media can also be an effective ally for researchers – and ultimately patients- when it comes to raising both funds and awareness for coeliac disease.
An elusive diagnosis can mean years of suffering
Due to its wide-ranging symptoms, coeliac disease is difficult to diagnose, such that the number of people actually diagnosed with the disease is far lower than the number of people believed to be suffering from it. Estimates for Europe, Australia and New Zealand all point to approximately 1 in 100 people as having coeliac disease. In fact, the Coeliac UK estimates that only 24% of coeliac suffers have received a clinical diagnosis and that it takes an average of 13 years for an individual to be diagnosed with coeliac disease from the beginning of their symptoms[i].
One of the ways in which coeliac disease may elude diagnosis is when a person tests negative for certain antibodies believed to be indicators of the disease. In such cases, the coeliac diagnosis may be discarded, with patients either not receiving the right treatment or embarking on a fruitless search for a different cause for their symptoms.
With this in mind, researchers from the San Carlos Hospital Healthcare Research Institute in Madrid are developing a method for identifying new biomarkers for coeliac disease[ii]. “Our aim is to develop a diagnostic method based on processes which are found in a majority of patients and which, therefore, can be used to identify those patients currently showing negative test results”, explains Concepción Núñez, the study’s lead researcher.
Claiming that the proposed method represents an important advance on current diagnostic methods, Nuñez goes on to say that the research promises to allow for diagnosis in patients who have began a gluten-free diet after only three days, without the need for them to re-introduce gluten in their diet for a prolonged period of time and therefore suffer unnecessary pain and discomfort. The study also hopes to avoid the need for a duodenal biopsy, an invasive procedure which is widely used in diagnosis[iii] [iv].
Having seen very promising results with a small test group, the team is now seeking financing to extend its research. One of the ways they are doing this is through crowdfunding, or public-access fundraising via specific platforms, normally online.
The more the merrier, for many research projects
According to an article the Washington Post[v], since first making an appearance on the internet in 2009, crowdfunding sites have gained ground with the scientific community as an effective way to raise money for research projects at a time when government funding may not be as readily available. Indeed, the article cites the first major study on the science crowdfunding’s effectiveness, pointing out that one of the key factors to success was the ability to connect with a large audience via popular social media sites such as Facebook, Twitter and YouTube. Some researchers even allow prospective donors to interact with them directly about their projects.
Not only does the internet provide researchers with easier access to potential donors and sponsors but it also offers far fewer much administrative hurdles. However, while the disappearance of both borders and bureaucracy offers a smoother ride for researchers, it nevertheless poses significant issues of safety, data protection, regulation and quality standards.
Provided that such research adheres to strict regulatory standards and best practices, Best Doctors shares the scientific world’s enthusiasm for technology as a powerful tool for research sharing and fundraising and encourages our readers to learn more about the many research projects in development around the world.
The San Carlos Hospital research team invites anyone currently following a gluten-free diet (whether or not they have been formally diagnosed with coeliac disease) to participate in the research by contacting the team at the following email: firstname.lastname@example.org