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Fluids and Barriers of the CNS

Open Access

A Swedish national follow-up programme for children and adolescents with myelomeningocele

  • Sven Mattsson1Email author,
  • Margareta Dahl2,
  • Ingrid Olsson3,
  • Maggie Wendelius4,
  • Lena Westbom5 and
  • Eva Åström6
Cerebrospinal Fluid Research20096(Suppl 2):S43

Published: 27 November 2009


Cohort StudyFuture DevelopmentRenal DamageNational RegisterOccupational Therapy


In 1998 a Swedish national follow-up programme for children and adolescents with myelomeningocele (MMC), with focus on neurogenic bladder and bowel dysfunction was launched. In 2004, 600 children and adolescents with MMC from 0 - 18 years of age were included in the programme and the needs for further medical follow-up after transition into adulthood for the cohort born 1986 - 89 has been presented (Olsson et al 2007). A subgroup of 39 children with MMC in the south-east region of Sweden born 1993 - 2003, was evaluated (Wide et al 2007), showing a high success in preventing renal damage when keeping to the proactive follow-up programme. The programme was evaluated and revised, now enlarged to include also other areas for follow-up e.g. neonatal care, gastroenterology, orthopedics, neurosurgery, endocrinology, cognition, sexuality, latex allergy, transition etc, also including guidelines for physiotherapy and occupational therapy. The programme will also include a national MMC-register. The aim is to get standardized evidence based national recommendations for the follow-up of children and adolescents with MMC from birth into adulthood.

Materials and methods

A network of professionals working with children with MMC has presented guidelines as far as possible evidence based, for the different areas of follow-up. Editors are neuro-pediatricians from the six university hospitals in Sweden. Regular cohort studies are planned for every 3-4 year period to follow the future development of the total MMC-population in Sweden.


The first chapters are available on Internet (; neuropediatrik, vårdprogram) on the site of the Swedish Neuro Pediatric Society, SNPF. A national register is under construction.


The Swedish national follow-up programme from 1998 for children and adolescents with neurogenic bladder and bowel dysfunction is after evaluation and revision, enlarged to include all aspects of follow-up for children and adolescents with MMC. The programme was launched January 2009 and is available on the Internet.

Authors’ Affiliations

Department of IKE/Pediatrics, University of Linköping, Linköping, Sweden
Akademiska Barnsjukhuset, Uppsala, Sweden
Drottning Silvias Barn o ungdomssjukhus, Göteborg, Sweden
Barn o ungdomskliniken, Norrlands Universitetssjukhus, Umeå, Sweden
Barn o ungdomssjukhuset, Universitetssjukhuset, Lund, Sweden
Astrid Lindgrens Barnsjukhus, Karolinska Sjukhuset, Stockholm, Sweden


© Mattsson et al; licensee BioMed Central Ltd. 2009

This article is published under license to BioMed Central Ltd.