CANDID Conference 2022

Conference Agenda

June 8-9, 2022

All of the video recordings are available below or on our YouTube channel. You can also get a recap of the entire conference through this recent podcast episode hosted by Dr. Alycia Halladay.

Welcome Remarks, Family Panel, & Survey Results

Welcome and Conference Overview

CANDID Team & William Bennett, MD, MS

A few brief words from CANDID team member Dr. Heidi Grabenstatter of the International Foundation for CDKL5 Research and pediatric gastroenterologist Dr. William Bennett on the scope and importance of this meeting.

The Impact of GI Disorders on Quality of Life

Family Panel

Four families share their struggles and triumphs navigating life and the medical system with a loved one who experiences wide-ranging and often extreme GI symptoms. Topics of discussion include constipation, reflux/GERD, pain, cyclic vomiting, and the use of feeding tubes. These families highlight the urgent need to develop tools and treatments  that address the unique needs of people with neurodevelopmental disorders.

The Big Picture (and Survey Results)

William Bennett, MD, MS

Pediatric gastroenterologist Dr. William Bennett gives a broad overview of GI dysfunction in NDDs and some of the major issues encountered in clinical practice. This presentation includes the analysis of the results of our survey on the prevalence and character of GI dysfunction in different NDD groups, as well as a discussion of its strengths and shortcomings.

The Nervous System-Gut Connection

This session focuses on the links between the brain and GI system, often called the “gut.” The speakers for this session are both practicing medical doctors – neurologist and neurodevelopmental disorders specialist Dr. Andres Jimenez Gomez of Joe DiMaggio Children’s Hospital, and pediatric gastroenterologist Dr. Kent Williams of Nationwide Children’s Hospital

GI and other comorbidities in neurodevelopmental disorders

Andres Jimenez Gomez, MD

Brain-gut issues in an autism GI clinic

Kent Williams, MD

Q&A

This session was followed by an informal Q&A with the speakers. Questions asked by our attendees and discussed here include:

What are the most common treatments for severe constipation?

Is daily suppository or enema use harmful? Is Miralax a concern?

What causes chronic diarrhea? What is the role of diet?

 Do seizure meds affect the GI tract?

The Spectrum of GI Disorders in Neurodevelopmental Disorders and Their Impacts

Neurodevelopmental disorders often come with a wide range of comorbid conditions that can have major impacts on the body. In this session, pediatric gastroenterologist Dr. Kathleen Motil of Baylor College of Medicine in Houston uses her extensive experience with Rett syndrome to talk about the interaction of nutrition and GI dysfunction. Dr. Kara Gross Margolis of Columbia University Irving Medical Center follows up with a talk on how the neurons that link the brain and the gut affect inflammation in the GI system.

Growth and nutritional deficiencies – lessons from Rett Syndrome

Kathleen Motil, MD, PhD

The brain-gut-microbiome axis in autism spectrum disorders

Kara Gross Margolis, MD

Q&A

This session was followed by an informal Q&A with the speakers. Questions asked by our attendees and discussed here include:

Prebiotics and probiotics – what potential role could they have in treatment?

What is the best use of research funding?

How do we build studies that are able to include people whose conditions have historically made research participation difficult?

A Need to Improve Detection and Monitoring of GI Distress in Neurodevelopmental Disorders

GI disorders can cause severe discomfort for anyone – but for some people with neurodevelopmental disorders, communicating this discomfort is difficult. How do we tackle this problem and develop better methods for identifying their GI-related pain and distress? Indiana University Medical Center gastroenterologist Dr. Joseph Croffie and Dr. Baha Moshiree of  Atrium Health Wake Forest  discuss the insufficiency of some common diagnostic methods and why it is important to develop approaches that are more appropriate for this population.

Traditional diagnostic strategies in pediatric gastroenterology and the challenges of their application to neurodevelopmental disorders

Joseph Croffie, MD, MPH

A need to improve detection and monitoring of GI distress in neurodevelopmental disorders — the adult perspective

Baha Moshiree, MD, MSc

On the Horizon: Finding New Methods to Study GI Disorders in NDD Populations

In this session, Dr. Calliope Holingue, a researcher affiliated with the Johns Hopkins School of Public Health and the Kennedy Krieger Institute, describes her work in developing more NDD-appropriate surveys to assess GI dysfunction. In the next talk, Dr. Julia Dallman of the University of Miami tells us what we can learn about GI from zebrafish, as well as progress on a new app being developed to track symptoms at home. This session was generously sponsored by CureShank

Adapting survey instruments to better capture gastrointestinal distress in NDD populations

Calliope Holingue, MPH, PhD

Harnessing the power of model systems and finding non-invasive ways to collect human data

Julia Dallman,  PhD

Q&A

This session was followed by an informal Q&A with the speakers. Questions asked by our attendees and discussed here include:

 

Where can we learn more about the Stripe symptom tracker?

What is the most realistic path for development of new outcome measures for use in neurodevelopmental disorders?

SPEAKERS

William Bennett, MD, MS
William Bennett, MD, MS

Associate Professor of Pediatrics and Adjunct Associate Professor of Urology at Indiana University School of Medicine and Pediatric Gastroenterologist at Indiana University Health – Riley Children’s Hospital

Joseph M. Croffie, MD, MPH
Joseph M. Croffie, MD, MPH

Professor of Clinical Pediatrics & Pediatric Gastroenterology, Hepatology, and Nutrition at Indiana University School of Medicine, Director of the Pediatric Gastrointestinal Motility Laboratory, and  Pediatric Gastroenterologist at Riley Children’s Hospital.

    Julia Dallman, PhD
    Julia Dallman, PhD

    Associate Professor, Biology at University of Miami

    Kara Gross Margolis, MD
    Kara Gross Margolis, MD

    Associate Professor of Pediatrics and Pediatric Gastroenterologist at Columbia University Irving Medical Center

    Calliope Holingue, MPH, PhD
    Calliope Holingue, MPH, PhD

    Psychiatric epidemiologist, faculty member at Kennedy Krieger Institute Center for Autism and Related Disorders and the Johns Hopkins Bloomberg School of Public Health.

    Andres Jimenez-Gomez, MD
    Andres Jimenez-Gomez, MD

    at Joe DiMaggio Children’s Hospital

    Baharak Moshiree, MD
    Baharak Moshiree, MD

    Director of Motility in the Division of Digestive Health and Professor of Medicine in the Division of Gastroenterology and Hepatology at Atrium Health – Carolinas Medical Center (UNC Charlotte)

    Kathleen Motil, MD, PhD
    Kathleen Motil, MD, PhD

    Professor of Pediatrics – Gastroenterology, Hepatology & Nutrition at Children’s Nutrition Research Center, Baylor College of Medicine and Texas Children’s Medical Center – Rett Center

    Kent Williams, MD
    Kent Williams, MD

    Assistant Professor of Clinical Pediatrics at Ohio State University College of Medicine and Pediatric Gastroenterologist at Nationwide Children’s Hospital

    In addition to the contributions of the CANDID partners, this conference was made possible through the sponsorship of the following organizations:

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    Our Partners and Sponsors