European Cystic Fibrosis Society

Page updated: 7 December 2011
 

A prospective multicentre study of DIOS treatment alternatives and concomitant risk factors

Under the "Associated Documents" please find the latest Newsletter from the DIOS Study Team (30 Nov 11)

Please read the letter and instructions below before processing to the online survey.

Dear colleague,

Distal intestinal obstructive syndrome (DIOS) is unique to patients with CF; it is characterized by complete (DIOS) or partial (incomplete DIOS) bowel obstruction by an abnormal viscous mucofecal material in the terminal ileum and caecum.

The ESPGHAN CF working group established a consensus on definitions (Houwen RJ et al. J Pediatr Gastroenterol Nutr 2010; 50 (1): 38-42) which allows accurate future studies. As DIOS is still associated with significant morbidity it is of interest to consider a PROSPECTIVE multinational study aimed at evaluating standard practices for curative and maintenance therapy preventing recurrence and concomitant risk factors of occurrence.

We hope that this will be helpful for planning prevention and for providing guidelines on the most valuable conservative medical treatment.

This survey is monitored by both the ECFS and the ESPGHAN societies.

The project has been approved by the IRB (N° IRB00006477) CHU Bichat-Claude Bernard. June 2009, Pr JM Desmonts Chair of the IRB.

We have prepared a short questionnaire in order to collect relevant data. We hope that all CF centres will collaborate for this survey. We did our best to make it simple, but still informative. A national coordinator can help you.

Data will be stored at the server of University Hospital Robert Debré in Paris, France and the results will be available to all of you via the ECFS website and its newsletters.

On entering the site for the first time, please register, then go to the User guide (video demonstration). You will then be able to enter your patients.

Link to survey - please click here (external site)

We are indebted to the president of ECFS, Prof. Stuart Elborn and the ECFS Board for their cooperation and for making available the ECFS site for this important project. All the collaborating centres will be acknowledged and we hope to present analysis of the data at the 2013 ECFS meeting.

We acknowledge the Cystic Fibrosis French Association “Vaincre La Mucoviscidose” for supporting this study (project 2010/RC1017).

Newsletter2 from the DIOS Study Team