Children with early-onset inflammatory bowel disease (IBD): analysis of a pediatric IBD consortium registry.

Studies examining the inheritance of inflammatory bowel disease (IBD) within different family groups have been the basis for recent molecular advances in the genetics of IBD. The derived heritability in Crohn's disease (CD) is higher than in many other complex diseases. The risk of IBD is highest in first-degree relatives of a CD proband, but first-degree relatives of a proband suffering from ulcerative colitis (UC) and more distant relatives are also at increased risk. Disease concordance rates in IBD have been examined in multiplex families and in three large European twin studies.

Family and twin studies in inflammatory bowel disease

Purpose of report
This document has been commissioned by the British Society of Gastroenterology. It is intended to draw together the evidence needed to fill the void created by the absence of a national framework or guidance for service provision for the management of patients with gastrointestinal and hepatic disorders. It sets out the service, economic and personal burden of such disorders in the UK, describes current service provision, and draws conclusions about the effectiveness of current models, based on available evidence. It does not seek to replicate existing guidance, which has been produced for upper and lower gastrointestinal cancers, hepatobiliary and pancreatic disorders, and many chronic disorders of the gut. It does, however, draw on evidence contained in these documents. It is intended to be of value to patient groups, clinicians, managers, civil servants, and politicians, particularly those responsible for developing or delivering services for patients with gastrointestinal disorders.

Methods used
A systematic review of the literature was undertaken to document the burden of disease and to identify new methods of service delivery in gastroenterology. This systematic review was supplemented by additional papers, identified when the literature on incidence, mortality, morbidity, and costs was assessed.

Routine data sources were interrogated to obtain additional data on burden of disease, the activity of the NHS, and costs, in relation to gastrointestinal disorders.

The views of users of the service were sought, through discussions with the voluntary sector and through a workshop held at the Royal College of Physicians in December 2004.

The views of professionals were obtained by wide dissemination of the document in a draft form, seeking feedback on the content and additional material.

https://gut.bmj.com/content/gutjnl/56/suppl_1/1.1.full.pdf

Gastroenterology services in the UK. The burden of disease, and the organisation and delivery of services for gastrointestinal and liver disorders: a review of the evidence

The recent molecular advances in the understanding of the genetics of inflammatory bowel disease (IBD) have their grounding in studies examining IBD within different family groups and populations. The risk of IBD is highest in first-degree relatives of an IBD proband but more distant relatives are also at increased risk. The risk is higher for relatives of a CD proband. The risks of developing IBD for 'high-risk' relatives might be as great as 1 in 3 but in general first-degree relatives have a 1 in 10-20 risk. Three recent systematic studies have identified a total of 326 European twin pairs to examine disease concordance rates. The derived heritability in Crohn's disease is greater than for many complex diseases and is currently under detailed examination. Strong concordance has been shown, in particular for disease type and disease location, in multiplex families and twin studies. More than 75% children are diagnosed with IBD at a younger age than their parents but true genetic anticipation appears unlikely.

E M Faybush

Papers

Generational differences in the age at diagnosis with IBD: genetic anticipation, bias, or temporal effects