Predictors of not using medication for EoE

Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED’s Health Sciences Advisory Council, interview Evan S. Dellon, MD, and Elizabeth T. Jensen, PhD, about a paper they published on predictors of patients receiving no medication for treatment of eosinophilic esophagitis.

Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.

 

Key Takeaways:

[:52] Co-host Ryan Piansky introduces the episode, brought to you thanks to the support of Education Partners GSK, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz.

 

[1:14] Holly introduces today’s topic, predictors of not using medication for EoE, and today’s guests, Dr. Evan Dellon and Dr. Elizabeth Jensen.

 

[1:29] Dr. Dellon is an Adjunct Professor of Epidemiology at the University of North Carolina School of Medicine in Chapel Hill. He is also the Director of the UNC Center for Esophageal Diseases and Swallowing.

 

[1:42] Dr. Dellon’s main research interest is in the epidemiology, pathogenesis, diagnosis, treatment, and outcomes of eosinophilic esophagitis (EoE) and eosinophilic GI diseases (EGIDs).

 

[1:55] Dr. Jensen is a Professor of Epidemiology with a specific expertise in reproductive, perinatal, and pediatric epidemiology. She has appointments at both Wake Forest University School of Medicine and the University of North Carolina at Chapel Hill.

 

[2:07] Her research primarily focuses on etiologic factors in the development of pediatric immune-mediated chronic diseases, including understanding factors contributing to disparities in health outcomes.

 

[2:19] Both Dr. Dellon and Dr. Jensen also serve on the Steering Committee for EGID Partners Registry.

 

[2:24] Ryan thanks Dr. Dellon and Dr. Jensen for joining the podcast today.

 

[2:29] Dr. Dellon was the first guest on this podcast. It is wonderful to have him back for the 50th episode! Dr. Dellon is one of Ryan’s GI specialists. Ryan recently went to North Carolina to get a scope with him.

 

[3:03] Dr. Dellon is an adult gastroenterologist at the University of North Carolina at Chapel Hill. He directs the Center for Esophageal Diseases and Swallowing. Clinically and research-wise, he is focused on EoE and other eosinophilic GI diseases.

 

[3:19] His research interests span the entire field, from epidemiology, diagnosis, biomarkers, risk factors, outcomes, and a lot of work, more recently, on treatments.

 

[3:33] Dr. Jensen has been on the podcast before, on Episode 27. Holly invites Dr. Jensen to tell the listeners more about herself and her work with eosinophilic diseases.

 

[3:46] Dr. Jensen has been working on eosinophilic gastrointestinal diseases for about 15 years. She started some of the early work around understanding possible risk factors for the development of disease.

 

[4:04] She has gone on to support lots of other research projects, including some with Dr. Dellon, where they’re looking at gene-environment interactions in relation to developing EoE.

 

[4:15] She is also looking at reproductive factors as they relate to EoE, disparities in diagnosis, and more. It’s been an exciting research trajectory, starting with what we knew very little about and building to an increasing understanding of why EoE develops.

 

[5:00] Dr. Dellon explains that EoE stands for eosinophilic esophagitis, a chronic allergic condition of the esophagus.

 

[5:08] You can think of EoE as asthma of the esophagus or eczema of the esophagus, although in general, people don’t grow out of EoE, like they might grow out of eczema or asthma. When people have EoE, it is a long-term condition.

 

[5:24] Eosinophils are a type of white blood cell, specializing in allergy responses. Normally, they are not in the esophagus. When we see them there, we worry about an allergic process. When that happens, that’s EoE.

 

[5:40] Over time, the inflammation seen in EoE and other allergic cell activity causes swelling and irritation in the esophagus. Early on, this often leads to a range of upper GI symptoms — including poor growth or failure to thrive in young children, abdominal pain, nausea, and symptoms that can mimic reflux.

 

[5:58] In older kids, symptoms are more about trouble swallowing. That’s because the swelling that happens initially, over time, may turn into scar tissue. So the esophagus can narrow and cause swallowing symptoms like food impaction.

 

[6:16] Ryan speaks of living with EoE for decades and trying the full range of treatment options: food elimination, PPIs, steroids, and, more recently, biologics.

 

[6:36] Dr. Dellon says Ryan’s history is a good overview of how EoE is treated. There are two general approaches to treating the underlying condition: using medicines and/or eliminating foods that we think may trigger EoE from the diet.

 

[6:57] For a lot of people, EoE is a food-triggered allergic condition.

 

[7:01] The other thing that has to happen in parallel is surveying for scar tissue in the esophagus. If that’s present and people have trouble swallowing, sometimes stretching the esophagus is needed through esophageal dilation.

 

[7:14] There are three categories of medicines used for treatment. Proton pump inhibitors are reflux meds, but they also have an anti-allergy effect in the esophagus.

 

[7:29] Topical steroids are used to coat the esophagus and produce an anti-inflammatory effect. The FDA has approved a budesonide oral suspension for that.

 

[7:39] Biologics, which are generally systemic medications, often injectable, can target different allergic factors. Dupilumab is approved now, and there are other biologics that are being researched as potential treatments.

 

[7:51] Even though EoE is considered an allergic condition, we don’t have a test to tell people what they are allergic to. If it’s a food allergy, we do an empiric elimination diet because allergy tests aren’t accurate enough to tell us what the EoE triggers are.

 

[8:10] People will eliminate foods that we know are the most common triggers, like milk protein, dairy, wheat, egg, soy, and other top allergens. You can create a diet like that and then have a response to the diet elimination.

 

[8:31] Dr. Jensen and Dr. Dellon recently published an abstract in the American Journal of Gastroenterology about people with EoE who are not taking any medicine for it. Dr. Jensen calls it a real-world data study, leveraging electronic health record patient data.

 

[8:51] It gives you an impression of what is actually happening, in terms of treatments for patients, as opposed to a randomized control trial, which is a fairly selected patient population. This is everybody who has been diagnosed, and then what happens with them.

 

[9:10] Because of that, it gives you a wide spectrum of patients. Some patients are going to be relatively asymptomatic. It may be that we arrived at their diagnosis while working them up for other potential diagnoses.

 

[9:28] Other patients are going to have rather significant impacts from the disease. We wanted to get an idea of what is actually happening out there with the full breadth of the patient population that is getting diagnosed with EoE.

 

[9:45] Dr. Jensen was not surprised to learn that there are patients who had no pharmacologic treatment.

 

[9:58] Some patients are relatively asymptomatic, and others are not interested in pursuing medications initially or are early in their disease process and still exploring dietary treatment options.

 

[10:28] Holly sees patients from infancy to geriatrics, and if they’re not having symptoms, they wonder why bother treating it.

 

[10:42] Dr. Jensen says it’s a point of debate on the implications of somebody who has the disease and goes untreated. What does that look like long-term? Are they going to develop more of that fibrostenotic pattern in their esophagus without treatment?

 

[11:07] This is a question we’re still trying to answer. There is some suggestion that for some patients who don’t manage their disease, we very well may be looking at a food impaction in the future.

 

[11:19] Dr. Dellon says we know overall for the population of EoE patients, but it’s hard to know for a specific patient. We have a bunch of studies now that look at how long people have symptoms before they’re diagnosed. There’s a wide range.

 

[11:39] Some people get symptoms and get diagnosed right away. Others might have symptoms for 20 or 30 years that they ignore, or don’t have access to healthcare, or the diagnosis is missed.

 

[11:51] What we see consistently is that people who may be diagnosed within a year or two may only have a 10 or 20% chance of having that stricture and scar tissue in the esophagus, whereas people who go 20 years, it might be 80% or more.

 

[12:06] It’s not everybody who has EoE who might end up with that scar tissue, but certainly, it’s suggested that it’s a large majority.

 

[12:16] That’s before diagnosis. We have data that shows that after diagnosis, if people go a long time without treatment or without being seen in care, they also have an increasing rate of developing strictures. 

 

[12:29] In general, the idea is yes, you should treat EoE, because on average, people are going to develop scar tissue and more symptoms. For the patient in front of you with EoE but no symptoms, what are the chances it’s going to get worse? You don’t know.

 

[13:04] There are two caveats with that. The first is what we mean by symptoms. Kids may have vomiting and growth problems. Adults can eat carefully, avoiding foods that hang up in the esophagus, like breads and overcooked meats, sticky rice, and other foods.

 

[13:24] Adults can eat slowly, drink a lot of liquid, and not perceive they have symptoms. When someone tells Dr. Dellon they don’t have symptoms, he will quiz them about that. He’ll even ask about swallowing pills. 

 

[13:40] Often, you can pick up symptoms that maybe the person didn’t even realize they were having. In that case, that can give you some impetus to treat.

 

[13:48] If there really are no symptoms, Dr. Dellon thinks we’re at a point where we don’t really know what to do.

 

[13:54] Dr. Dellon just saw a patient who had a lot of eosinophils in their small bowel with absolutely no GI symptoms. He said, “I can’t diagnose you with eosinophilic enteritis, but you may develop symptoms.” People like that, he will monitor in the clinic.

 

[14:14] Dr. Dellon will discuss it with them each time they come back for a clinic visit.

 

[14:19] Holly is a speech pathologist, but also sees people for feeding and swallowing. The local gastroenterologist refers patients who choose not to treat their EoE to her. Holly teaches them things they should be looking out for.

 

[14:39] If your pills get stuck or if you’re downing 18 ounces during a mealtime, maybe it’s time to treat it. People don’t see these coping mechanisms they use that are impacting their quality of life. They’ve normalized it.

 

[15:30] Dr. Dellon says, of these people who aren't treated, there’s probably a subset who appropriately are being observed and don’t have a medicine treatment or are on a diet elimination.

 

[15:43] There’s also probably a subset who are inappropriately not on treatment. It especially can happen with students who were under good control with their pediatric provider, but moved away to college and didn’t transfer to adult care.

 

[16:08] They ultimately come back with a lot of symptoms that have progressed over six to eight years.

 

[16:18] Ryan meets newly diagnosed adult patients at APFED’s conferences, who say they have no symptoms, but chicken gets caught in their throat. They got diagnosed when they went to the ER with a food impaction.

 

[16:38] Ryan says you have to wonder at what point that starts to get reflected in patient charts. Are those cases documented where someone is untreated and now has EoE?

 

[16:49] Ryan asks in the study, “What is the target EGID Cohort and why was it selected to study EoE? What sort of patients were captured as part of that data set?”

 

[16:58] Dr. Jensen said they identified patients with the ICD-10 code for a diagnosis of EoE. Then they looked to see if there was evidence of symptoms or complications in relation to EoE. This was hard; some of these are relatively non-specific symptoms.

 

[17:23] These patients may have been seeking care and may have been experiencing some symptoms that may or may not have made it into the chart. That’s one of the challenges with real-world data analyses.

 

[17:38] Dr. Jensen says they are using data that was collected for documenting clinical care and for billing for clinical care, not for research, so it comes with some caveats when doing research with this data.

 

[18:08] Research using electronic health records gives a real-world perspective on patients who are seeking care or have a diagnosis of EoE, as opposed to a study trying to enroll a patient population that potentially isn’t representative of the breadth of individuals living with EoE.

 

[18:39] Dr. Dellon says another advantage of real-world data is the number of patients. The largest randomized controlled trials in EoE might have 400 patients, and they are incredibly expensive to do.

 

[18:52] A study of electronic health records (EHR) is reporting on the analysis of just under 1,000. The cohort, combined from three different centers, has more than 1,400 people, a more representative, larger population. 

 

[19:16] Dr. Dellon says when you read the results, understand the limitations and strengths of a study of health records, to help contextualize the information.

 

[19:41] Dr. Dellon says it’s always easier to recognize the typical presentations. Materials about EoE and studies he has done that led to medicine approvals have focused on trouble swallowing. That can be relatively easily measured.

 

[20:01] Patients often come to receive care with a food impaction, which can be impactful on life, and somewhat public, if in a restaurant or at work. Typical symptoms are also the ones that get you diagnosed and may be easier to treat.

 

[20:26] Dr. Dellon wonders if maybe people don’t treat some of the atypical symptoms because it’s not appreciated that they can be related to EoE.

 

[20:42] Holly was diagnosed as an adult. Ryan was diagnosed as a toddler. Holly asks what are some of the challenges people face in getting an EoE diagnosis.

 

[20:56] Dr. Jensen says symptoms can sometimes be fairly non-specific. There’s some ongoing work by the CEGIR Consortium trying to understand what happens when patients come into the emergency department with a food bolus impaction.

 

[21:28] Dr. Jensen explains that we see there’s quite a bit of variation in how that gets managed, and if they get a biopsy. You have to have a biopsy of the esophagus to get a diagnosis of EoE.

 

[21:45] If you think about the steps that need to happen to get a diagnosis of EoE, that can present barriers for some groups to ultimately get that diagnosis.

 

[21:56] There’s also been some literature around a potential assumption about which patients are more likely to be at risk. Some of that is still ongoing. We know that EoE occurs more commonly in males in roughly a two-to-one ratio. Not exclusively in males, obviously, but a little more often in males.

 

[22:20] We don’t know anything about other groups of patients that may be at higher risk. That’s ongoing work that we’re still trying to understand. That in itself can also be a barrier when there are assumptions about who is or isn't likely to have EoE.

 

[23:02] Dr. Dellon says that in adolescents and adults, the typical symptoms are trouble swallowing and food sticking, which have many causes besides EoE, some of which are more common.

 

[23:18] In that population, heartburn is common. Patients may report terrible reflux that, on questioning, sounds more like trouble swallowing than GERD. Sometimes, with EoE, you may have reflux that doesn’t improve. Is it EoE, reflux, or both?

 

[24:05] Some people will have chest discomfort. There are some reports of worsening symptoms with exercise, which brings up cardiac questions that have to be ruled out first.

 

[24:19] Dr. Dellon mentions some more atypical symptoms. An adult having pain in the upper abdomen could have EoE. In children, the symptoms could be anything in the GI tract. Some women might have atypical symptoms with less trouble swallowing.

 

[24:58] Some racial minorities may have those kinds of symptoms, as well. If you’re not thinking of the condition, it’s hard to make the diagnosis.

 

[25:08] Dr. Jensen notes that there are different cultural norms around expressing symptoms and dietary patterns, which may make it difficult to parse out a diagnosis.

 

[25:27] Ryan cites a past episode where access to a GI specialist played a role in diagnosing patients with EoE. Do white males have more EoE, or are their concerns just listened to more seriously?

 

[25:57] Ryan’s parents were told when he was two that he was throwing up for attention. He believes that these days, he’d have a much easier time convincing a doctor to listen to him. From speaking to physicians, Ryan believes access is a wide issue in the field.

 

[26:23] Dr. Dellon tells of working with researchers at Mayo in Arizona and the Children’s Hospital of Phoenix. They have a large population of Hispanic children with EoE, much larger than has been reported elsewhere. They’re working on characterizing that.

 

[26:49] Dr. Dellon describes an experience with a visiting trainee from Mexico City, where there was not a lot of EoE reported. The trainee went back and looked at the biopsies there, and it turned out they were not performing biopsies on patients with dysphagia in Mexico City.

 

[27:13] When he looked at the patients who ended up getting biopsies, they found EoE in 10% of patients. That’s similar to what’s reported out of centers in the developed world. As people are thinking about it more, we will see more detection of it.

 

[27:30] Dr. Dellon believes those kinds of papers will be out in the next couple of months, to a year.

 

[27:36] Holly has had licensure in Arizona for about 11 years. She has had nine referrals recently of children with EoE from Arizona. Normally, it’s been one or two that she met at a conference.

 

[28:00] Ryan asks about the research on patients not having their EoE treated pharmacologically. Some treat it with food avoidance and dietary therapy. Ryan notes that he can’t have applesauce, as it is a trigger for his EoE.

 

[28:54] Dr. Jensen says that’s one of the challenges in using the EHR data. That kind of information is only available to the researchers through free text. That’s a limitation of the study, assessing the use of dietary elimination approaches.

 

[29:11] Holly says some of her patients have things listed as allergies that are food sensitivities. Ryan says it’s helpful for the patients to have their food sensitivities listed along with their food allergies, but it makes records more difficult to parse for research.

 

[30:14] Dr. Dellon says they identify EoE by billing code, but the codes are not always used accurately. Natural Language Processing can train a computer system to find important phrases. Their collaborators working on the real-world data are using it.

 

[30:59] Dr. Dellon hopes that this will be a future direction for this research to find anything in the text related to diet elimination.

 

[31:32] Dr. Jensen says that older patients were less likely to seek medication therapy. She says it’s probably for a couple of reasons. First, older patients may have been living with the disease for a long time and have had compensatory mechanisms in place.

 

[32:03] The other reason may be senescence or burnout of the disease, long-term. Patients may be less symptomatic as they get older. That’s a question that remains to be answered for EoE. It has been seen in some other disease processes.

 

[32:32] Dr. Dellon says there’s not much data specifically looking at EoE in the older population. Dr. Dellon did work years ago with another doctor, and they found that older patients had a better response to some treatments, particularly topical steroids.

 

[32:54] It wasn’t clear whether it was a milder aspect of the disease, easier to treat, or because they were older and more responsible, taking their medicines as prescribed, and having a better response rate. It’s the flip side of work in the pediatric population.

 

[33:16] There is an increasingly aging population with EoE. Young EoE patients will someday be over 65. Dr. Dellon hopes there will be a cure by that point, but it’s an expanding population now.

 

[33:38] Dr. Jensen says only a few sites are contributing data, so they hope to add additional sites to the study. For some of the less common outcomes, they need a pretty large patient sample to ask some of those kinds of questions.

 

[33:55] They will continue to follow up on some of the work that this abstract touched on and try to understand some of these issues more deeply.

 

[34:06] Dr. Dellon mentions other work within the cohort. Using Natural Language Processing, they are looking at characterizing endoscopy information and reporting it without a manual review of reports and codes. You can’t get that from billing data.

 

[34:29] Similarly, they are trying to classify patient severity by the Index of Severity with EoE, and layer that on looking at treatments and outcomes based on disease severity. Those are a couple of other directions where this cohort is going.

 

[34:43] Holly mentions that this is one of many research projects Dr. Jensen and Dr. Dellon have collaborated on together. They also collaborate through EGID Partners. Holly asks them to share a little bit about that.

 

[34:53] Dr. Jensen says EGID Partners is an online registry where individuals, caregivers, and parents of children affected with EGIDs can join.

 

[35:07] EGID Partners also needs people who don’t live with an EGID to join, as controls. That gives the ability to compare those who are experiencing an EGID relative to those who aren’t.

 

[35:22] When you join EGID Partners, they provide you with a set of questionnaires to complete. Periodically, they push out a few more questionnaires.

 

[35:33] EGID Partners has provided some really great information about patient experience and answered questions that patients want to know about, like joint pain and symptoms outside the GI tract.

 

[36:04] To date, there are close to 900 participants in the registry from all over the world. As it continues to grow, it will give the ability to look at the patient experience in different geographical areas.

 

[36:26] Dr. Dellon says we try to have it be interactive, because it is a collaboration with patients. The Steering Committee works with APFED and other patient advocacy groups from around the world. 

 

[36:41] The EGID Partners website shows general patient locations anonymously. It shows the breakdown of adults with the condition and caregivers of children with the condition, the symptom distribution, and the treatment distribution.

 

[37:03] As papers get published and abstracts are presented, EGID Partners puts them on the website. Once someone joins, they can suggest a research idea. Many of the studies they have done have come from patient suggestions.

 

[37:20] If there’s an interesting idea for a survey, EGID Partners can push out a survey to everybody in the group and answer questions relatively quickly.

 

[37:57] Dr. Dellon says a paper came out recently about telehealth. EoE care, in particular, is a good model for telehealth because it can expand access for patients who don’t have providers in their area.

 

[38:22] EoE is a condition where care involves a lot of discussion but not a lot of need for physical exams and direct contact, so telehealth can make things very efficient. 

 

[38:52] EGID Partners surveyed patients about telehealth. They thought it was efficient and saved time, and they had the same kind of interactions as in person. In general, in-state insurance covered it. Patients were happy to do those kinds of visits again.

 

[39:27] Holly says Dr. Furuta, herself, and others were published in the Gastroenterology journal in 2019 about starting to do telehealth because patients coming to the Children’s Hospital of Colorado from out of state had no local access to feeding therapy.

 

[39:50] Holly went to the board, and they allowed her to get licensure in different states. She started with some of the most impacted patients in Texas and Florida in 2011 and 2012. They collected data. They published in 2019 about telehealth’s positive impact.

 

[40:13] When 2020 rolled around, Holly had trained a bunch of people on how to do feeding therapy via telehealth. You have to do all kinds of things, like make yourself disappear, to keep the kids engaged and in their chairs!

 

[40:25] Now it is Holly’s primary practice. She has licenses in nine states. She sees people all over the country. With her diagnosis, her physicians at Mass General have telehealth licensure in Maine. She gets to do telehealth with them instead of driving two hours.

 

[40:53] Dr. Jensen tells of two of the things they hope to do at EGID Partners. One is trying to understand more about reproductive health for patients with an EGID diagnosis. Only a few studies have looked at this question, and with very small samples.

 

[41:15] As more people register for EGID Partners, Dr. Jensen is hoping to be able to ask some questions related to reproductive health outcomes.

 

[41:27] The second goal is a survey suggested by the Student Advisory Committee, asking questions related to the burden of disease specific to the teen population.

 

[41:48] This diagnosis can hit that population particularly hard, at a time when they are trying to build and sustain friendships and are transitioning to adult care and moving away from home. This patient population has a unique perspective we wanted to hear.

 

[42:11] Dr. Jensen and Dr. Dellon work on all kinds of other projects, too.

 

[42:22] Dr. Dellon says they have done a lot of work on the early-life factors that may predispose to EoE. They are working on a large epidemiologic study to get some insight into early-life factors, including factors that can be measured in baby teeth.

 

[42:42] That’s outside of EGID Partners. It’s been ongoing, and they’re getting close, maybe over the next couple of years, to having some results.

 

[43:03] Ryan says all of those projects sound so interesting. We need to have you guys back to dive into those results when you have something finalized.

 

[43:15] For our listeners who want to learn more about eosinophilic disorders, we encourage you to visit apfed.org and check out the links in the show notes below.

 

[43:22] If you’re looking to find specialists who treat eosinophilic disorders, we encourage you to use APFED’s Specialist Finder at apfed.org/specialist.

 

[43:31] If you’d like to connect with others impacted by eosinophilic diseases, please join APFED’s online community on the Inspire Network at apfed.org/connections.

 

[43:41] Ryan thanks Dr. Dellon and Dr. Jensen for joining us today. This was a fantastic conversation. Holly also thanks APFED’s Education Partners GSK, Sanofi, Regeneron, and Takeda for supporting this episode.

 

Mentioned in This Episode:

Evan S. Dellon, MD, MPH, Academic Gastroenterologist,
University of North Carolina School of Medicine

 

Elizabeth T. Jensen, MPH, PhD, Epidemiologist,

Wake Forest University School of Medicine,

University of North Carolina at Chapel Hill

 

Predictors of Patients Receiving No Medication for Treatment of Eosinophilic Esophagitis in the United States: Data from the TARGET-EGIDS Cohort

 

Episode 15: Access to Specialty Care for Eosinophilic Esophagitis (EoE)

 

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Real Talk: Eosinophilic Diseases Podcast

apfed.org/specialist

apfed.org/connections

apfed.org/research/clinical-trials

 

Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of GSK, Sanofi, Regeneron, and Takeda.

 

Tweetables:

 

“I’ve been working on eosinophilic gastrointestinal diseases for about 15 years. I started some of the early work around understanding possible risk factors for the development of disease. I've gone on to support lots of other research projects.” — Elizabeth T. Jensen, MPH, PhD

 

“You can think of EoE as asthma of the esophagus or eczema of the esophagus, although in general, people don’t grow out of EoE, like they might grow out of eczema or asthma. When people have it, it really is a long-term condition.” — Evan S. Dellon, MD, MPH

 

“There are two general approaches to treating the underlying condition, … using medicines and/or eliminating foods from the diet that we think may trigger EoE. I should say, for a lot of people, EoE is a food-triggered allergic condition.” — Evan S. Dellon, MD, MPH

 

“I didn’t find it that surprising [that there are patients who had no treatment]. Some patients are relatively asymptomatic, and others are not interested in pursuing medications initially or are … still exploring dietary treatment options.” — Elizabeth T. Jensen, MPH, PhD

 

“We have a bunch of studies now that look at how long people have symptoms before they’re diagnosed. There’s a wide range. Some people get symptoms and are diagnosed right away. Other people might have symptoms for 20 or 30 years.” — Evan S. Dellon, MD, MPH

 

“EGID Partners is an online registry where individuals, caregivers, and parents of children affected with EGIDs can join. EGID Partners also needs people who don’t live with an EGID to join, as controls.” — Elizabeth T. Jensen, MPH, PhD