TY - JOUR T1 - NETS<sup>1HD</sup> study: development of a Hirschsprung’s disease core outcome set JF - Archives of Disease in Childhood JO - Arch Dis Child SP - 1143 LP - 1151 DO - 10.1136/archdischild-2017-312901 VL - 102 IS - 12 AU - Benjamin Saul Raywood Allin AU - Timothy Bradnock AU - Simon Kenny AU - Jennifer J Kurinczuk AU - Gregor Walker AU - Marian Knight A2 - , Y1 - 2017/12/01 UR - http://adc.bmj.com/content/102/12/1143.abstract N2 - Objective The objective of this study was to develop a Hirschsprung’s disease (HD) core outcome set (COS).Methods Candidate outcomes were identified from a systematic review and stakeholder nomination. A three-phase Delphi process and consensus meeting were used to prioritise candidate outcomes based on scores assigned by stakeholder participants using a nine-point scale. In phases two and three, participants were shown graphical representations of their panel’s scores and all panels’ scores respectively for each outcome from the previous phase. After the third phase, outcomes prioritised by two or three panels were taken forward to the consensus meeting. The COS was formed from the 10 highest scoring outcomes meeting the threshold for inclusion (≥70% 7–9 and &lt;15% 1–3).Results Eighty-nine stakeholders (82%) completed all three phases of the Delphi process. Seventy-four outcomes were assessed in phase one of the Delphi process, the following 10 of which met criteria for inclusion in the COS: (1) death with cause specified, (2) long-term faecal incontinence, (3) long-term voluntary bowel movements without need for enemas, or rectal or colonic irrigation, (4) long-term psychological stress for the individual with Hirschsprung’s disease, (5) long-term urinary incontinence, (6) objective score of quality of life, (7) objective score of bowel function, (8) unplanned reoperation, (9) &gt;need for a permanent stoma, (10) enterocolitis.Conclusions This HD COS is formed of 10 outcomes deemed important by key stakeholders. Use of this COS in research will reduce outcome reporting heterogeneity and increase our ability to identify gold standard treatments for HD. ER -