The Importance of Patient-Centered Research

April 4, 2012

The Importance of Patient-Centered Research


Celiac disease research needs you!

Opt-in to stay up-to-date on the latest news.

Yes, I want to advance research
No, I’d prefer not to
Don’t show me this again

You are a critical part of research on gluten-related disorders. Yes, you.

By Abigail Lefkowitz

Dietary fads often appear out of nowhere and gain popularity at an astonishing rate. To me, this seemed the case with gluten-free products. I first noticed the trend in 2008, coincidentally the same year I was diagnosed with celiac disease.

Gluten-free items used to be hard to find and only available in small health shops, but now most commercial supermarkets have shelves dedicated to gluten-free products manufactured specifically for those following the diet. Even more recently, restaurants provide exclusive gluten-free sections on their menus to make dining out less of a hassle for those with dietary restrictions.

Obviously, there is an increasing demand for gluten-free food as more people discover they have either celiac disease or non-celiac gluten sensitivity and must follow a strict gluten-free diet. As more individuals seek out diagnosis, it becomes evident that patient participation is the key to continued growth.

The National Foundation for Celiac Awareness (NFCA) provides a Celiac Disease Symptoms Checklist on their website, allowing users to enter information about their symptoms and illnesses to determine their risk for celiac disease. Last year, I had the opportunity to analyze data from the Symptoms Checklist, along with data from a follow-up survey, as part of a volunteer research position at the Lankenau Institute for Medical Research. The data were especially meaningful to me not only on a technical but also a personal level, so producing a compelling analysis was important.

Because I worked closely with this survey as the main data analyst, I am familiar with the population that most commonly uses the tool. Patients with a multitude of symptoms and illnesses frequently associated with celiac disease and non-celiac gluten sensitivity search for explanations for their medical woes by using the checklist to determine if they might have a gluten-related disorder. They either seek diagnosis prior to or after filling out the checklist, depending on whether or not they are using it as a diagnosis tool. In either case, these patients are taking control of their health by looking for answers or support.

With the growing awareness of celiac disease and non-celiac gluten sensitivity, more people with general gastrointestinal discomfort are finding that either of these conditions may serve as an explanation for their common symptoms. Additionally, others with more serious illnesses can target the root cause and begin to heal from the inside out with a gluten-free diet. Both groups can use NFCA’s checklist to their advantage. Those seeking diagnosis can determine whether or not a doctor’s visit is in order, and those already diagnosed can contribute their personal statistics to the ever-growing warehouse of data.

Sound research is dependent upon large samples and honest feedback. It is important to have a varied sample of respondents to gather accurate information about the population. Increased awareness of celiac disease and non-celiac gluten sensitivity, including diagnosis rates, in turn increases both the need for and relevance of valid research. With greater patient participation comes both reliable data and significant analysis.

Note: NFCA presented an abstract titled “The Use of Disease Symptom Checklist in Self-Initiated Diagnoses of Celiac Disease and Non-Celiac Gluten Sensitivity” at a conference in Florence in March 2012. The conference, titled “Mastering the Coeliac Condition from Medicine to Social Sciences and Food Sciences,” was organized by the Italian Association of Coeliac Disease (AIC) and by the Italian Coeliac Disease Foundation (FC).

About Abigail Lefkowitz

Abigail currently holds a full time position as a Data Analyst for an E-Marketing Web Analytics company in Philadelphia; she is simultaneously working on her Masters in Statistics at Villanova University. In the winter of 2011, she had the opportunity to assist the NFCA through her volunteer position at the Lankenau Institute for Medical Research, where she was able to bring her unique analytical viewpoint to the data and produce meaningful insights.