All posts by Mary Jo Strobel

Digestive Disease Week® (DDW) 2019

APFED is onsite this weekend at Digestive Disease Week® (DDW) in San Diego. This event brings together doctors and researchers in the fields of gastroenterology, hepatology, endoscopy and gastrointestinal surgery. The meeting showcases more than 5,000 abstracts and hundreds of lectures on the latest advances in GI research, medicine and technology. More information can be found at www.ddw.org.

A variety of talks and abstracts on eosinophilic gastrointestinal diseases were presented at the meeting. Below we summarize a few of the highlights:

Sessions and Abstracts

  • “Prospective Evaluation of a Novel, Endoscopic Activity Assessment System for Eosinophilic Gastritis,” presented by Dr. Ikuo Hirano. This research
    highlighted data from a study conducted by CEGIR aimed to evaluate endoscopic features in both children and adults with eosinophilic gastritis (EG) that were enrolled in CEGIR’s OMEGA study so that an endoscopic scoring instrument — the Eosinophilic Gastritis Endoscopic Reference System (EG-REFS)– could be developed. This scoring system is important because an instrument to validate outcome measures in EGID is needed to help advance clinical trials for EGID.
  • “Close Follow-up is Associated with Fewer Stricture Formation and Results in Earlier Detection of Histological Relapse in the Long-term Management of Eosinophilic Esophagitis,” presented by Dr. Thomas Grueter. In this research study, the authors concluded that they advocate for “regular assessment of disease activity in order to detect
    relapsing disease as early as possible, which might minimize the risk for disease complications.”
  • “Eosinophilic Esophagitis-Like Disease with Lack of Significant Esophageal Eosinophilia: Description of a New Disease Entity,” presented by Dr. Thomas Grueter. This abstract described a new disease entity that is like eosinophilic esophagitis, but lacks significant eosphageal eosinophilia. “EoE-like disease is a new entity with distinct (immuno)-histological features, but shared clinical features with EoE,” concluded the authors of the study. “…Despite the absence of significant eosinophilia, considerable disease activity can be observed. Follow-up is warranted to assess for progression to EoE.”
  • “Oral Viscous Budesonide Versus Swallowed Fluticasone Inhaler for Initial Treatment of Adolescents and Adults with Eosinophilic Esophagitis: A Randomized, Double-Blind, Double-Dummy Clinical Trial,” presented by Dr. Evan Dellon. This research set out to determine whether oral viscous budesonide is more effective than swallowing fluticasone from a multi-dose inhaler (MDI) to lower eosinophil counts in the esophagus and improve symptoms of dysphagia for initial treatment of EoE . This research showed both treatments significantly decreased the eosinophil counts, improved the symptoms of dysphagia as well as endoscopic features. “A swallowed slurry was not superior to MDI, indicating either OVB or fluticasone MDI are acceptable choices for EoE therapy,” the authors of the abstract noted.
  • “Functional Luminal Imaging Probe Provides an Accurate Assessment of Esophageal Diameter in Patients with Eosinophilic Esophagitis Undergoing Dilation,” presented by Dr. Ronak Patel. This research involved a cohort of 30 adult patients who have EoE, with an average age of 40 (70% being male), found that this probe when used during endoscopy may improve the accuracy of identifying strictures, which in turn would help improve decision making when it comes to therapeutic dilation.
  • “Eosinophilic Esophagitis and Gastroenteritis 2019: State-of-the-Art,” presented by Dr. David Katzka underscored the key themes of EGID research presented at DDW and delved into characteristics and challenges of eosinophilic gastroenteritis.
  • A session titled “Scientific Advances in Eosinophilic Esophagitis and Gastroenteritis” brought together attendees to discuss how genetic analyses are helping to improve scientific understanding of EGIDs, the importance of novel mediators in EoE pathogenesis, as well as the role of dendritic and epithelial cells in EoE. Speakers included Drs. Tetsuo Shoda, Eunice Odiase, Edaire Cheng, Elizabeth Jensen, Amanda Muir and Joshua Wechsler.
  • A clinical symposium held on Saturday titled “Eosinophilic Esophagitis: What’s New and What to Do” featured lectures given by Drs. Fouad Moawad, Javier Molina-Infante, Alex Straumann, and Mirna Chehade. Attendees learned about factors associated with increasing prevalence of EoE, PPI therapy management in EoE, and treatment options for EoE and EGE patients who don’t respond to steroids.
  • An abstract authored by Evan Dellon, et al, highlighted results from the interim dataset from patients with EG/EGE from the screening phase of a Phase 2 study of AK002, a therapeutic antibody that targets Siglec-8, which is an inhibitory receptor found on the surface of eosinophils and mast cells. The authors concluded that, “…in addition to GI eosinophilia, [mast cell] counts were markedly and consistently elevated in gastric and duodenal tissue in symptomatic patients with overlapping EG and EGE.” These findings suggest that both mast cells and eosinophils have a pathogenic role in EGIDs. “Treatments for EGIDs may need to target both cell types for optimal effect,” the authors noted.
    “Mast cells in addition to eosinophils are markedly elevated at baseline in patients with eosinophilic gastritis and/or gastroenteritis.” Dellon ES, Peterson KA, Genta RM, et. al.
  • Investigators shared their findings from aggregated Electronic Health Record data from 26 major integrated healthcare systems in the U.S. from 1999-2018. “We found that individuals with CD [Crohn’s Disease] are nearly four times more likely to have a diagnosis of EoE compared to individuals without CD,” the authors write. They also noted that further research is needed to confirm their findings.

   “Prevalence of eosinophilic esophagitis in Crohn’s Disease in the United States between 2013 and 2018: A population-based national study.” Mansoor E, Sheriff MZ, Saleh MA, et al.

  • Researchers at the University of Pennsylvania and the Children’s Hospital of Philadelphia set out to examine the burden of endoscopy on adult patients with EoE at their tertiary referral center between 2007-2017. Their findings showed a total of 1,044 patients with EoE had at least one upper endoscopy over the course of the 10-year period that they analyzed. “The average number of endoscopies done per patient was 3.4 with a maximum of 13 endoscopies,” the authors wrote. The most common reasons for patients needing multiple endoscopies were esophageal strictures requiring multiple dilations (38%) and disease not responding to medical and dietary management (62%). “These procedures can result in significant financial burden on patients as well as the health-care system,” the authors noted as part of their conclusion. “Findings support the need to develop alternatives to endoscopy in the treatment and diagnosis of EoE.”

   “The endoscopic burden of eosinophilic esophagitis over a 10-year-perioid.” Gluckman C, Falk GW, Muir AB, Benitez A, Lynch KL.

CEGIR-related work:
Highlights of research conducted by the Consortium for Eosinophilic Gastrointestinal Disease Researchers (CEGIR):

  • In a retrospective study to assess the prevalence of eosoinophilic colitis (EC) at five pediatric and three adult hospitals over the last 3-10 years, investigators found that EC may be over-diagnosed using pediatric ICD coding “In summary, we found that EC is less common than previously described, suggesting over-diagnosis of EC …Establishing clinical-histopathologic guidelines and distinct ICD codes for EC will allow for better estimation of disease prevalence and will inform future clinical and translational studies involving EGIDs,” the authors note.

    “Over Estimation of the Prevalence of Eosinophilic Colitis with Reliance on a Single Billing Code.” Muir AB, Jensen ET, Wechsler, et al

  • Using data collected from the Contact Registry that was established by CEGIR and associated patient advocacy groups, including APFED, investigators analyzed patient reported symptoms and co-morbidities in EoE relative to non-EoE EGIDs: eosinophilic gastritis, eosinophilic gastroenteritis and eosinophilic colitis. The study authors noted that weight loss and gastroparesis was more frequently reported by those with non-EoE subsets of EGID, and that these patients were more likely to report higher frequency of nausea, stomach pain, diarrhea, constipation, bloating, fatigue, feeling of isolation, and deep muscle or joint pain. “Significant differences exist in the symptoms and co-morbidities experienced between those with EoE versus a non-EoE EGID(s), with more severe symptoms and higher frequency of comorbidieis experienced by those with non-EoE EGIDs,” the authors write. “Additional investigation is needed to elucidate the factors that may contribute to the high disease burden of these poorly-understood conditions.”
    “High patient-reported disease burden for eosinophilic gastrointestinal disorders.” Jensen ET, Abonia JP, Aceves SS, et al.
  • Researchers set out to develop and validate a diagnostic panel for eosinophilic gastritis (EG) diagnosis and management. And to help better understand that pathogenesis of this condition. The authors noted that preliminary evidence showed that this diagnostic panel score better correlated with symptoms then eosinophil counts for patients with intermediate tissue eosinophil levels (≥30 HPF).
    “Development of the eosinophilic gastritis molecular diagnostic panel.” Shoda T, Wen T, Caldwell JM, et al.
  • CEGIR investigators aimed to prospectively evaluate endoscopic features in patients with eosinophilic gastritis so that there is a better understanding of endoscopic manifestations and develop a scoring instrument. “Endoscopic features were prospectively recorded in real-time using a classification and grading system specifically developed for EG,” the study authors note. “A strong and significant correlation between [these] scores and physician global assessment of endoscopy severity was demonstrated.
    “Prospective evaluation of a novel, endoscopic activity assessment system for eosinophilic gastritis.” Hirano I, Collins, MH, King E, et al.

APFED Executive Director Mary Jo Strobel; Dr. David A. Leiman, Assistant Professor of Medicine, Division of Gastroenterology, Duke University Medical Center; and Dr. Rajitha Venkatesh, Pediatric Gastroenterologist, Duke Children’s Hospital & Health Center

Dr. Alain Benitez, Clinical Research Program Manager, Suzi and Scott Lustgarten Center for GI Motility at Children’s Hospital of Philadelphia and Dr. Amanda Muir,  Pediatric Gastroenterologist in the Division of Gastroenterology, Hepatology and Nutrition at Children’s Hospital of Philadelphia.

Dr. Mirna Chehade, Associate Professor of Pediatrics and Medicine at the Icahn School of Medicine at Mount Sinai and at the Mount Sinai Kravis Children’s Hospital and APFED Executive Director Mary Jo Strobel

New CEGIR Site Announced

Contacts:  Munazza Noor, Baylor College of Medicine, Phone: (832)-824-0939, E-mail: munazza.noor@bcm.edu

Mary Jo Strobel, American Partnership for Eosinophilic Disorders, Phone: (713)-493-7749, Email: mjstrobel@apfed.org

PRESS RELEASE
For Immediate Release

(ATLANTA, GA)—The American Partnership for Eosinophilic Disorders (APFED) and Baylor College of Medicine are excited to announce that the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) has recently added Baylor College of Medicine (BCM)/Texas Children’s Hospital (TCH) in Houston, Texas as the newest CEGIR site.  BCM/TCH is open to enroll patients (ages 3-100) into the CEGIR 7801 Study: OMEGA—A Prospective, Multicenter Study to Compare and Validate Endoscopic, Histologic, Molecular and Patient-Reported Outcomes in Pediatric and Adult Patients with Eosinophilic Esophagitis (EoE), Gastritis (EG) and Colitis (EC)*.

EoE, EG and EC are eosinophil-associated diseases (EADs).  EADs are chronic inflammatory disorders characterized by elevated levels of eosinophils (a type of white blood cell) in one or more specific places in tissues, organs, and/or bloodstream, which in turn causes inflammation and damage.  Specifically, EoE, EG and EC are Eosinophilic Gastrointestinal Diseases (EGIDs) which means that there are elevated levels of eosinophils in the gastrointestinal tract.

CEGIR is conducting the OMEGA study because they want to learn more about EGIDs.  As part of that goal, one area of study will compare how well a patient feels—their symptoms—with what the tissue samples look like under a microscope.  The study is designed to give researchers and clinicians a better idea of the correlation of symptoms to the tissue, help them find clues about the disease in the tissue samples and assess how this information could be used in the future to help guide diagnosis and treatment plans.

If you would like to learn more about the OMEGA study and see if you may be eligible to participate, please visit: https://www.rarediseasesnetwork.org/cms/cegir/7801 .  If you are interested in seeing if you can participate in this study at Baylor College of Medicine/Texas Children’s Hospital in Houston, Texas, please contact Munazza Noor using the phone number and/or e-mail address listed above.

*The OMEGA study is currently only enrolling patients with EG and/or EC and has been closed to EoE patients.  Patients with a diagnosis of Eosinophilic Gastroenteritis (EGE) or Eosinophilic Duodenitis (ED) can contact a study coordinator for additional eligibility details.

 

About American Partnership for Eosinophilic Disorders (APFED)

APFED is a non-profit organization dedicated to patients and their families coping with eosinophilic disorders.  APFED’s mission is to passionately embrace, support and improve the lives of patients and families affected by eosinophil-associated diseases through education and awareness, research, support and advocacy.  www.apfed.org

 

About Baylor College of Medicine

Baylor College of Medicine (www.bcm.edu) in Houston is recognized as a premier academic health sciences center and is known for excellence in education, research and patient care. It is the only private medical school in the greater southwest and is ranked 16th among medical schools for research and 5th for primary care by U.S. News & World Report. Baylor is listed 21st among all U.S. medical schools for National Institutes of Health funding and number one in Texas. Located in the Texas Medical Center, Baylor has affiliations with seven teaching hospitals and jointly owns and operates Baylor St. Luke’s Medical Center, part of CHI St. Luke’s Health. Currently, Baylor trains more than 3,000 medical, graduate, nurse anesthesia, physician assistant and orthotics students, as well as residents and post-doctoral fellows. Follow Baylor College of Medicine on Facebook (http://www.facebook.com/BaylorCollegeOfMedicine) and Twitter (http://twitter.com/BCMHouston).

 

About the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR)

CEGIR (U54AI117804) is a part of the NCATS Rare Diseases Clinical Research Network (RDCRN).  RDCRN is an initiative of the Office of Rare Diseases (ORDR), NCATS, funded through a collaboration between the NCATS, the NIAID and the NIDDK.  CEGIR is also supported by patient advocacy groups including APFED, CURED and EFC.  www.rdcrn.org/cegir

$7 Million Match for #GivingTuesday on 11/27!

This year, in support of #GivingTuesday on November 27, 2018, Facebook is partnering with PayPal to match up to $7 million in donations made on Facebook to eligible US-based 501(c)(3) nonprofits.

  • The matching dollars are available to any US-based nonprofit.
  • Each nonprofit and donor are eligible to be matched up to $50,000.
  • Facebook and PayPal will match donations starting at 8:00 AM EST and will continue matching donations made to nonprofits until the $7M match runs out.

How Can You Help APFED?
All #Giving Tuesday funds raised for APFED on Facebook will go toward our Give the Gift of HOPE campaign, which will help fund APFED’s Hope on the Horizon Research Program, as well as vital support, education, and advocacy initiatives!

  • Make a Facebook Donation and Encourage Others to Do the Same. All donations to facebook.com/APFED/ on Nov. 27th could be matched! Mark your calendar, set your alarm, and make your donation early on Nov. 27th. Matching starts at 8:00 AM EST!
  • Host a Facebook Fundraiser on Behalf of APFED! Visit fb.com/fund/APFED/ to get started. Share your fundraiser with your friends and family and ask them to donate and share your #GivingTuesday fundraiser. Don’t forget to share your fundraiser early on #GivingTuesday to maximize those matching dollars!

Don’t miss out on this incredible fundraising opportunity to double your donation and fundraise to help those living with eosinophil-associated diseases (EADs).

More About Facebook Fundraisers
Nonprofit fundraisers let you, our APFED supporters, raise money quickly and easily on Facebook. You can set up a dedicated page here to share why you support APFED, while also raising awareness of EADs.

Whether you’ve volunteered, donated, or you have a personal story to share, tell your friends and family why finding a cure for eosinophil-associated disease is important to you.

Your friends and family can donate in a few clicks without leaving Facebook, making it easier for you to collect donations and reach your fundraising goal.

Learn more ways to give on APFED’s Give the Gift of HOPE campaign page. And don’t forget to mark Tuesday, November 27, 2018 on your calendar for #GivingTuesday!