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MMCUP – a secondary prevention follow-up program in spina bifida and hydrocephalus.
- Josenby, Annika Lundkvist (author)
-
- Westbom, Lena (author)
- Lund University,Lunds universitet,Pediatrik, Lund,Sektion V,Institutionen för kliniska vetenskaper, Lund,Medicinska fakulteten,Paediatrics (Lund),Section V,Department of Clinical Sciences, Lund,Faculty of Medicine
- (creator_code:org_t)
- 2015
- 2015
- English.
- In: Developmental Medicine & Child Neurology. - 0012-1622. ; 57:Suppl 4, s. 52-52
- Conference paper (peer-reviewed)
Abstract
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- In persons born with myelomeningocele (MMC) secondaryprevention measures are important to survive and to retainfunction. Swedish guidelines in MMC have been developedand a follow-up programme is linked to a quality of care reg-istry, internet-based since 2012. The rationale for creation ofthis registry were to avoid complications in MMC by provid-ing a medical and health overview, facilitate the coordinationof services, improve quality of care, learn more about MMC,health and social care management. Professionals and patientsfill in internet-based registration forms. InterdisciplinaryMMCUP-teams in each of the six tertiary health care regionsin Sweden run the program. One team includes the registryholder to create, update and quality check the internet registryat a national registry competence centre, ERCSYD. 91 chil-dren born with MMC or lipo-MMC from 2007–2012 lived inSweden 1 Jan 2013, seven were born abroad. There were morefemales (n=50) than males among the 84 children born in Swe-den; total incidence 1.26/10000, 1/3 of the celes was closed. Ofthe prospectively reported children 1 Jan 2013 (n=86), two werenot operated on; the remaining 84 children, 4 months–5.9 yearsof age, had 302 operations, of which 202 neurosurgical. Updatedresults will be presented. An unselected total population bornwith MMC is followed, to date including about 100 children0–7 years of age. The high proportion of closed celes, and ahigher incidence in females in this population are preliminaryfindings that contrast to earlier studies.
Subject headings
- MEDICIN OCH HÄLSOVETENSKAP -- Klinisk medicin -- Pediatrik (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Clinical Medicine -- Pediatrics (hsv//eng)
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