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Statements and questions were made available to an international, multidisciplinary panel of clinicians in an online format and a Microsoft Word\u2013formatted version of the draft via e\u2010mail. Input was sought using a 2\u2010stage modified Delphi process to reach consensus. Items included clinical assessment of growth, anthropometry, feeding difficulties and management to increase energy intake, decrease feeding difficulties, and consideration of gastrostomy.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results:<\/jats:title><jats:p>Agreement was achieved on 101 of 112 statements. A comprehensive approach to the management of poor growth in Rett syndrome is recommended that takes into account factors such as feeding difficulties and nutritional needs. A body mass index of approximately the 25th centile can be considered as a reasonable target in clinical practice. Gastrostomy is indicated for extremely poor growth, if there is risk of aspiration and if feeding times are prolonged.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions:<\/jats:title><jats:p>These evidence\u2010 and consensus\u2010based recommendations have the potential to improve care of nutrition and growth in a rare condition and stimulate research to improve the present limited evidence base.<\/jats:p><\/jats:sec>","DOI":"10.1097\/mpg.0b013e31829e0b65","type":"journal-article","created":{"date-parts":[[2013,8,21]],"date-time":"2013-08-21T09:28:00Z","timestamp":1377077280000},"page":"451-460","source":"Crossref","is-referenced-by-count":60,"title":["Assessment and Management of Nutrition and Growth in Rett Syndrome"],"prefix":"10.1002","volume":"57","author":[{"given":"Helen","family":"Leonard","sequence":"first","affiliation":[{"name":"Telethon Institute for Child Health Research Centre for Child Health Research University of Western Australia Perth"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Madhur","family":"Ravikumara","sequence":"additional","affiliation":[{"name":"Department of Gastroenterology Princess Margaret Hospital for Children Perth"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gordon","family":"Baikie","sequence":"additional","affiliation":[{"name":"Department of Developmental Medicine Royal Children's Hospital Murdoch Children's Research Institute Melbourne"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nusrat","family":"Naseem","sequence":"additional","affiliation":[{"name":"Telethon Institute for Child Health Research Centre for Child Health Research University of Western Australia Perth"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Carolyn","family":"Ellaway","sequence":"additional","affiliation":[{"name":"Western Sydney Genetics Program Children's Hospital at Westmead Discipline of Paediatrics and Genetic Medicine University of Sydney Sydney Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alan","family":"Percy","sequence":"additional","affiliation":[{"name":"Civitan International Research Centre University of Alabama Birmingham AL"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Suzanne","family":"Abraham","sequence":"additional","affiliation":[{"name":"Department of Otolaryngology, Head Neck Surgery, and Radiology Albert Einstein College of Medicine Montefiore Medical Center Bronx NY"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Suzanne","family":"Geerts","sequence":"additional","affiliation":[{"name":"Civitan International Research Centre University of Alabama Birmingham AL"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jane","family":"Lane","sequence":"additional","affiliation":[{"name":"Civitan International Research Centre University of Alabama Birmingham AL"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mary","family":"Jones","sequence":"additional","affiliation":[{"name":"Katie's Clinic for Rett Syndrome Children's Hospital &amp; 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