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NETS¹ᴴᴰ Study: A Core Outcome Set for Hirschsprung’s Disease

New research has identified 10 core outcomes that key stakeholders consider most important in determining whether treatment of children with Hirschsprung’s disease (HD) has been successful. This research, titled the NETS¹ᴴᴰ study, has been published in the Archives of Disease in Childhood, and was conducted by NPEU researchers Ben Allin, Marian Knight and Jenny Kurinczuk and consultant paediatric surgeons Gregor Walker, Tim Bradnock and Simon Kenny. The study team worked with around 150 stakeholders including people with HD, parents of children with HD and healthcare professionals managing children with HD. Together they developed a HD core outcome set (COS) of 10 outcomes, which includes measures for mortality, quality of life, bowel function and unplanned reoperation.

HD is a rare disorder present at birth in which the nerves within the bowel are not properly developed. Whilst there are many ways to treat HD, no gold standard management strategy has been identified. Use of this HD COS can reduce the variability of reported outcomes of HD, making it easier to identify gold standard treatments for children with HD. You can read the published research in full on the BMJ site. Further research on the impact of different surgical interventions on the HD COS will begin in September 2017.

NETS²ᴴᴰ Breakfast Meeting at BAPS

The first NETS²ᴴᴰ site investigators meeting will be held from 08:00 to 09:00 on the 20th of July at the London Hilton Metropole (the venue for the BAPS Congress).  Any clinicians who want to help with the study are welcome to come along to find out more. Breakfast will be provided. Please email if you would like to attend. 

Round two of the NETS¹ᴴᴰ survey has gone live

Data collection for round two of the NETS²ᴴᴰ Delphi process started today. We anticipate that the survey will stay open until Monday the 25th of April, and that round three will open on the 16th of May. If you have any questions about the survey, please email Ben Allin.

NETS¹ᴴᴰ consensus meeting to be held with Leeds Colorectal Course

The consensus meeting for the NETS¹ᴴᴰ study will be held on the 21st of June at the Studio in Leeds. This meeting is being run in conjunction with the Leeds Colorectal Course, which will be held on the 22nd and 23rd of June at Leeds General Infirmary. The colorectal course is aimed primarily at senior trainees and consultant paediatric surgeons, and will consist of interactive sessions, case-based discussions, and radiology teaching on Hirschsprung’s Disease, Inflammatory Bowel Disease and Anorectal Malformations. More information can be found from the Leeds Colorectal Course advert , or from Parmjit Jajuha.

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