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Dr Sue Beath - Chair and Nutrition representative on BSPGHAN Council
Dr John Puntis – Chief investigator for BIFS
Dr Mark Dalzell – Consultant gastroenterologist at Alderhey Hospital
Ms Christine Holden - Specialist Nutrition Nurse at Birmingham Childrens
Ms Tracey Johnson – Senior Dietician at Birmingham Children’s Hospital
Dr Andrew A O Fagbemi - Consultant Paediatric Gastroenterologist at Booth Hall
Dr Susan Hill - Consultant Paediatric Gastroenterologist at Great Ormond Street
Dr Sue Protheroe - Consultant Paediatric Gastroenterologist at Birmingham Childrens
Ms Sarah Macdonald- Dietician at Great Ormond Street

Mr. Ian Sugarman- Paediatric Gastrointestinal Surgeon, Leeds General Infirmary

Mr Henry Gowen – BIFS Administrator, minuting secretary

 

Review of current management practices in IFALD. Please click here to view the document

 

Minutes of the BSPGHAN Committee for Nutrition
(previously the Intestinal Failure Working Group)

8th February 9 – 10.30hr at the Marriot Forest of Arden Hotel, Warwickshire. Click here to download

Minutes of the BSPGHAN Committee for Nutrition, Institute of Child Health, Birmingham, 22nd June 2007, Click here to download

 

Intestinal Failure Working Group Final Report

Click her to dowload an acrobat copy

This paper is open for consultation for three weeks (end March 07) after which it becomes an official document.

Comments to John Puntis at John.Puntis@leedsth.nhs.uk please.

 

The British Intestinal Failure Survey

What are the Aims of the study?

· To identify infants and children with Intestinal Failure

· To establish the natural history of Intestinal Failure arising in infancy and childhood

· To identify the number of children with end-stage Intestinal Failure who are likely to require transplantation for Intestinal Failure associated liver disease and/or other surgical intervention

How does the Survey work?

Members of BSPGHAN and BAPS are asked to report all new cases of Intestinal Failure at their centres. These cases are identified as patients who are aged 18 and under and who have been receiving Parenteral Nutrition for more than 27 days as an inpatient. Reporting can be done either by completing the pro forma sheet (see the link below) and sending them to the BIFS registry, or by using a custom made ACCESS PN database that can be adapted to the requirements of individual trusts. Patients are followed up every six months if a pro forma is used or automatically via a macro if the ACCESS PN database is used.

The information that we are collecting has been has been deliberately restricted to a few key data set points, so that reporting time can be kept to a minimum. Patients will be identified by initials, sex, date of birth and NHS number, PAS number will also be recorded for local identification. The main data set is concerned with patient diagnosis and the amount of time that the patient has been on PN. Dates can be entered to record significant clinical events such as commencement of PN, central venous catheter sepsis, onset of clinical jaundice and/or referral for transplant assessment. All of these points will give us a better understanding of the disease progression in these patients.

What needs to be done before commencement?

Ethical approval has been granted by the West Midlands MREC, it states that the study can take place without the need to apply for individual LREC approval. However approval will be required from your trust R&D department. A pack will be available from the registry manager to allow each centre to obtain this approval.

In accordance with the MREC guidelines, written consent will be required for each patient in the study, and for the storage of their details on the registry. Information sheets will be downloadable from the website for both parents and children, explaining the project. This should be given to the parents and older children before consent form is signed. One copy of the consent for is to be kept by the family, one is to be kept with the child's notes and one should be sent to the registry manger.

To Download please click the following

Pro forma registration Document

Child information Leaflet (age 7-11)

Child information Leaflet (age 12-16)

Parent Information Sheet

Consent form

Who will deal with the data handling?

The data is held on a secure computer at the Institute of Child Health in Birmingham. All reporting and analysis of data will be handled by Henry Gowen (Intestinal Failure Registry Manager). All data will be held securely and in compliance with the current Data Protection Act.

It is anticipated that six monthly reports will be generated from the database and will be posted on the website. To ensure confidentiality, centres will only be granted access to data specific to their centre and generic reports produced for NCG.

For more Information please contact

Dr John Puntis,
Dept of Paediatrics,
Room 142,
B Floor,
Clarendon Wing Leeds General Infirmary
Leeds
LS2 9NS
(0113) 392 3828
john.puntis@leedsth.nhs.uk

Henry Gowen,
Registry Manager,
3 rd Floor Registry Office,
Institute of Child Health,
Birmingham Children's Hospital,
Whittall Street
B4 6NH
(0121) 333 8733
Henry.Gowen@bch.nhs.uk

 

British Artifical Nutrition Survey report (2005)

click here to download a pdf copy

 

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