National Quality Registry for Spinal Dysraphism and Hydrocephalus (MMCUP)

• Registry Manager: Region Skåne
• Registry Centre - affiliation: Registry Centre South
• Start year: 2012
• Classifications used: KVÅ, ICD10, ICF, ATC (pharmaceuticals)
• This registry contains information on:

Description of registry

Open spina bifida (myelomeningocele, MMC), with associated hydrocephalus (“water on the brain”) and neurogenic bladder and bowel dysfunctions, is the congenital disability associated with the greatest and most complex lifelong needs for various highly specialised medical care and treatment. The Swedish Follow-Up Programme for Spinal Dysraphism and Hydrocephalus (MMCUP) is a quality registry aimed at:

• preventing secondary loss of function, morbidity, pain and lower quality of life – complications of MMC and hydrocephalus - through preventative monitoring with early intervention
• ensuring that treatment methods, surgical procedures, and surgically inserted materials that prove to be less effective or harmful are discarded in favour of more effective methods and materials
• ensuring a good standard of care throughout the country.

Population

The registry contains information on medical variables, health status, activity and functioning levels, and care interventions for people born with spina bifida who live in Sweden.

The registry is under construction. As of March 2016, the registry was monitoring 163 children born with spina bifida from 2007 onwards. These children have complex disabilities and are at continuous risk for secondary complications. The intention is to regularly monitor these children throughout their lives. Older children and adults can also be registered in their respective counties/regions. As of March 2016, the registry was also monitoring about 77 older children and 26 adults. Patient-reported measurements are planned.

Note: Variable lists are updated on a regular basis and should therefore be seen as preliminary. For the latest version, please contact the registry.