Solitano V, Bernstein CN, Dotan I, et al. Nature Reviews Gastroenterology & Hepatology. 2025;22:438–452. DOI: 10.1038/s41575-025-01063-x
Background & Rationale
Inflammatory bowel disease (IBD), comprising Crohn’s disease and ulcerative colitis, affects more than 7 million people worldwide. Prevalence continues rising across all age groups, particularly in regions where IBD was previously uncommon. The condition imposes substantial strain on health-care systems through direct medical costs and indirect consequences including reduced productivity, disability and diminished quality of life. Despite therapeutic advances, many individuals experience suboptimal disease control, with significant gaps in timely diagnosis and management. Regional disparities in health-care access exacerbate these challenges, particularly in low-income countries. The authors sought to establish a comprehensive, evidence-based research agenda through international collaboration.
Study Design
This consensus statement employed a Delphi methodology under the International Organization for the Study of Inflammatory Bowel Disease framework. Four co-chairs identified 16 experts representing clinical care, research, public health and patient advocacy. The group conducted literature analysis and produced evidence briefs across six domains: epidemiology; care models; treatment strategies; education and awareness; patient and community engagement; and leadership for health equity. Round 1 ran from 24 July to 15 August 2024; Round 2 from 1 to 30 November 2024. Respondents indicated agreement using a four-point Likert scale, with a ‘not qualified to respond’ option. Following Round 1 review of 333 comments, priorities were revised. Agreement grades: U denotes unanimous agreement, A denotes 90 to 99 per cent, B denotes 78 to 89 per cent, and C denotes 67 to 77 per cent.
Patient Population
A total of 330 individuals were invited to Round 1, with 307 completing the survey and 300 completing Round 2. Most respondents were aged 30 to 50 years (64 per cent), male (51.3 per cent), from high-income countries (64.7 per cent) and health-care providers (54.7 per cent). Europe and Central Asia had highest representation (46.7 per cent); sub-Saharan Africa lowest (1.0 per cent). Most held national gastroenterology association membership (75.7 per cent), with 44.3 per cent reporting 1 to 11 years IBD experience.
Key Findings
The panel reviewed 37 priorities across six domains. Combined agreement remained high, with mean ‘agree’ responses at 94.7 per cent in Round 2. All priorities except one achieved over 90 per cent agreement; one received grade B (85.0 per cent).
Domain 1 (epidemiology) identified seven priorities, including high-quality population-based research on health-care delivery, geospatial and temporal analyses across epidemiological stages, and research for under-represented populations.
Domain 2 (care models) included six priorities emphasizing multidisciplinary collaboration for alarm features in primary care (98.5 per cent), clear guidance on care pathways (96.1 per cent), and awareness of financial implications (98.6 per cent).
Domain 3 (treatment strategies) received grade A agreement for six priorities, including clinical pathways for early identification and intervention (98.1 per cent), methods to evaluate fibrosis (94.2 per cent), and optimal combination regimens (96.1 per cent).
Domain 4 (education and awareness) identified six priorities led by patient education on timely diagnosis (96.6 per cent), resources for primary care providers (96.7 per cent), and dietary education (96.1 per cent).
Domain 5 (patient perspectives) encompassed six priorities including psychosocial support (95.6 per cent), alignment of care goals (96.6 per cent), and equitable access to specialty centres (95.2 per cent).
Domain 6 (leadership and health equity) comprised six priorities, with research partnerships for resource-limited settings ranking first (97.1 per cent). Inclusion of neglected populations in artificial intelligence models received grade B (85.0 per cent), the only priority not achieving grade A.
Discussion
The authors noted IBD’s rising global prevalence, increasingly affecting paediatric populations in regions where previously uncommon. A 2021 survey identified increasing prevalence as the most substantial challenge, with marked differences between high-income and low-income countries regarding specialist access and treatments.
Addressing these challenges requires multidisciplinary collaboration involving paediatricians, specialists, surgeons, primary care providers, public health experts, policymakers, pharmaceutical companies, patient advocates and patients. Examples include Canada’s PACE Telemedicine Program, which has reduced unnecessary emergency visits and travel burdens.
The authors emphasized emerging presymptomatic diagnosis and prevention, with interventions aimed at delaying disease onset. They noted many gastroenterologists lack training in assessing sexual dysfunction, particularly in sexual and gender minorities. Untreated anxiety and depression lead to severe symptoms, increased flare-ups, poor adherence and higher hospitalization. The 2024 IBD UK report indicated only 6 per cent of services meet mental health support recommendations.
Limitations included under-representation of participants from Africa and patient advocacy groups, with predominance from high-income countries potentially influencing outcomes. The English-only survey may have limited broader participation.
Authors’ Conclusions
The authors concluded that approximately 7 million people worldwide live with IBD, and despite scientific advances, prevalence persists with increasing inequities necessitating accelerated prevention, management and treatment strategies. The identified priorities provide a comprehensive framework emphasizing quantifying IBD burdens, addressing disparities, validating care models, exploring novel treatments, advancing education, engaging patients and advocating for health equity policies. The comprehensive approach aims to enhance understanding, optimize care, promote engagement and ensure equitable access. The priorities serve as a guide for researchers and funders, fostering international collaboration to improve IBD management and reduce its global impact.
Reference
Solitano V, Bernstein CN, Dotan I, Dignass A, Domilici R, Dubinsky MC, Gearry RB, Hart A, Kaplan GG, Ma C, Magro F, Mak JWY, Ng SC, Panaccione R, Raja S, Rubin DT, Siegel CA, Jairath V, Peyrin-Biroulet L, Danese S. Shaping the future of inflammatory bowel disease: a global research agenda for better management and public health response. Nat Rev Gastroenterol Hepatol. 2025;22:438–452.
This Scientific Publication Summary is an objective summary of the published trial for personal and educational use. It does not constitute clinical advice, endorsement of the intervention, or a recommendation to alter clinical practice.