Conference proceedings: Inaugural meeting of the consortium for autism, genetic neurodevelopmental disorders, and digestive diseases

Individuals with neurodevelopmental disorders (NDDs), including autism spectrum disorder (ASD), often experience a higher prevalence of gastrointestinal (GI) symptoms but have complex medical and behavioral comorbidities that make diagnosis and treatment difficult. A multi‐stakeholder conference was convened to (a) determine patient and family experiences related to GI symptoms in NDDs, (b) review the clinicians' and researchers' perspectives, and (c) determine actionable steps for future research. The Consortium for Autism, Neurodevelopmental Disorders and Digestive Diseases (CANDID; www.candidgi.com) virtually over 2 days in 2022 and consisted of four key activities: (1) an electronic family survey to assess underlying NDDs and GI symptoms, (2) a session focused on family perspectives, (3) review current clinical care and research, and (4) discussion to identify key next steps. Survey results were obtained electronically via the REDCap platform, and descriptive statistics were generated. The sessions were recorded, and themes were identified. The pre‐conference survey ran for ~2 months and 739 families provided responses, with 634 completing all items. 83% had a child with an NDD under age 18, and most patients were White (85%) and non‐Hispanic (87%). Constipation (80%), GI reflux disease (51%), and bloating (49%) were the most frequently reported symptoms. Families gave unstructured feedback that the measures used in the surveys were often difficult to answer for patients with NDDs or who were nonspeaking. Family and clinical/scientific sessions identified several common themes, including (1) the need for less invasive diagnostic modalities, (2) the need to validate or adapt existing diagnostic measures (e.g., the Rome IV criteria) and outcome assessments, and (3) the need for enhanced attention to parent and caregiver input in treatment plans. Those providing care to children with NDDs, especially those with communication and cognitive challenges, should be aware of the differing needs in this community and consider family perspectives in managing, treating, and measuring GI issues. Future research should focus on adapting or creating diagnostic and research measures for those with NDDs, developing new diagnostic methods to account for diversity in neurodevelopment and communication, and improving methods for family and caregiver engagement in the care of GI disorders. Gastrointestinal (GI) problems are common comorbidities in those with neurodevelopmental disorders (NDDs). These GI conditions can compound problems in neurodevelopment, leading to behavioral and psychiatric challenges like aggression, self‐injury, anxiety, and withdrawn behavior.There is a dearth of data regarding the causes, course, diagnosis, and treatment of GI symptoms in this population. Gastrointestinal (GI) problems are common comorbidities in those with neurodevelopmental disorders (NDDs). These GI conditions can compound problems in neurodevelopment, leading to behavioral and psychiatric challenges like aggression, self‐injury, anxiety, and withdrawn behavior. There is a dearth of data regarding the causes, course, diagnosis, and treatment of GI symptoms in this population. A multidisciplinary Consortium for Autism, Neurodevelopmental Disorders and Digestive Diseases (CANDID) was formed to bring together key stakeholders to discuss GI conditions in those with NDDs and autism spectrum disorder.CANDID identified three key areas for future work: (1) adaptation of diagnostic and research measures for those with NDDs, (2) improved diagnostic methods for those with developmental or communication deficits, and (3) enhanced focus on family/caregiver input in planning for diagnosis and treatment. A multidisciplinary Consortium for Autism, Neurodevelopmental Disorders and Digestive Diseases (CANDID) was formed to bring together key stakeholders to discuss GI conditions in those with NDDs and autism spectrum disorder. CANDID identified three key areas for future work: (1) adaptation of diagnostic and research measures for those with NDDs, (2) improved diagnostic methods for those with developmental or communication deficits, and (3) enhanced focus on family/caregiver input in planning for diagnosis and treatment.