Lesson from the CONFER series
David Drobne and Julien Kirchgesner, ClinCom Members
 David Drobne © ECCO |
 Julien Kirchgesner © ECCO |
IBD manifests with numerous faces. It became clear some time ago that only by joining forces across multiple countries would we perhaps be able to identify and study rare manifestations of IBD and its complications. This was the reason why the CONFER taskforce (COllaborative Network For Exceptionally Rare case reports) was initiated under the auspices of the ClinCom committee.
There are five main themes of interest:
- Unusual clinical situations in which there are diagnostic or therapeutic gaps in knowledge
- Rare infections
- Uncommon beneficial drug effects or side-effects
- Rare IBD manifestations
- Infrequent disease associations (neoplastic, infectious etc.)
The ECCO CONFER is managed by a four-member steering committee [currently: David Drobne (Slovenia), Triana Lobaton (Belgium), Mette Julsgaard (Denmark) and Daniela Pugliese (Italy)]. The committee makes an annual call to all ECCO Members inviting the proposal of CONFER case projects. Two to four cases are selected by the CONFER Steering Committee and developed further. The next step is a call to all ECCO Members and affiliates who have encountered a similar case to contribute their case to the CONFER case series. All cases are then combined into a case series by a principal investigator and prepared for publication. This approach has proved highly effective as it has resulted in important publications in the field.
Some highlights of the ECCO CONFER Multicentre Case Series:
→ Continuous operation since 2016
→ 1243 cases reported and analysed
→ 31 original publications (most in JCC)
→ Contribution of data by >300 investigators
Currently round 10 of the collection of cases is running. In this round, three case series are being developed; more detail on the projects and the names of the principal investigators and case managers, to whom similar cases may be submitted, can be found online.
The three case titles are:
- Perianal Crohn's fistula in the absence of luminal disease - natural history, time to progression to luminal disease and management in contemporary clinical practice
- Exposure to JAK-inhibitors during pregnancy and risk of adverse pregnancy outcome
- Safety and efficacy of JAK inhibitors in patients with primary sclerosing cholangitis associated with inflammatory bowel disease.
In summary, over the past decade the CONFER taskforce has added important knowledge in the field of IBD. Please keep your eyes open in everyday clinical practice for potential CONFER cases.