Registries for shunt implantation
01 Jun 2018

We believe that real world evidence is a significant question for the future. However there is a challenge to identify the available data-sets and the scientific evidence generated.

We are in the process to develop a data-base that will cover the available registries in Europe with a link to the evidence generated. The aim is to perform a targeted search, share the information and ask for feedback to gradually build a more complete data-set.

The first topic we are looking in represents a rather limited question, but we are looking in to it due to on-going projects in the area.

We will also compare the registries we have found with the two official Registry of Registries that are frequently references:

These are the registries we have found relating to shunt surgery

(None of these registries are listed in the existing Registry of Registries)

These are the publications we have been able to identify for each registry:

Sweden : Neuro registry – Hydrocephalus

  • Long-term effects of complications and vascular comorbidity in idiopathic normal pressure hydrocephalus: a quality registry study. Andrén, Kerstin; Wikkelsö, Carsten; Sundström, Nina; Agerskov, Simon; Israelsson, Hanna; Laurell, Katarina; Hellström, Per; Tullberg, Mats. Journal of Neurology. Jan 2018
  • Subdural hematomas in 1846 patients with shunted idiopathic normal pressure hydrocephalus: treatment and long-term survival. Malm, Jan; Eklund, Anders; Sundström, Nina; Lagebrant, Marcus; Koskinen, Lars-Owe D. Journal of Neurosurgery. Oct 2017
  • Epilepsy, headache, and abdominal pain after shunt surgery for idiopathic normal pressure hydrocephalus: the INPH-CRasH study. Malm, Jan; Eklund, Anders; Israelsson, Hanna; Larsson, Jenny. Journal of Neurosurgery. Sep 2017
  • Vascular risk factors in INPH: A prospective case-control study (the INPH-CRasH study). Malm, Jan; Eklund, Anders; Wikkelsö, Carsten; Israelsson, Hanna; Laurell, Katarina; Kahlon, Babar; Leijon, Göran; Carlberg, Bo. Neurology. Feb 2017
  • Incidence and outcome of surgery for adult hydrocephalus patients in Sweden. Malm, Jan; Wikkelsö, Carsten; Sundström, Nina; Laurell, Katarina; Lundin, Fredrik; Kahlon, Babar; Cesarini, Kristina G; Leijon, Göran. British Journal of Neurosurgery. Jan 2017
  • Symptoms of Depression are Common in Patients With Idiopathic Normal Pressure Hydrocephalus: The INPH-CRasH Study. Malm, Jan; Eklund, Anders; Israelsson, Hanna; Allard, Per. Neurosurgery. Feb 2016
  • Risk factors for subdural hematomas in patients shunted for idiopathic normal pressure hydrocephalus. Malm, Jan; Eklund, Anders; Sundström, Nina; Wallmark, Johan; Koskinen, Lars-Owe. Fluids and Barriers of the CNS.  Sep 2015
  • Is there an over-prescription of psychotropic drugs to patients with Idiopathic Normal Pressure Hydrocephalus?.  Malm, Jan; Eklund, Anders; Israelsson, Hanna; Allard, Per. Fluids and Barriers of the CNS. Sep 2015
  • Influence of vascular risk factors and vascular disease on long-term outcome in idiopathic Normal Pressure Hydrocephalus; a Quality Registry based study. Andrén, Kerstin; Wikkelsö, Carsten; Sundström, Nina; Laurell, Katarina; Hellström, Per; Tullberg, Mats; Kahlon, Babar. Fluids and Barriers of the CNS. Sep 2015
  • Population based incidence and outcome of surgery for adult patients with hydrocephalus in Sweden. Malm, Jan; Wikkelsö, Carsten; Sundström, Nina; Laurell, Katarina; Lundin, Fredrik; Kahlon, Babar; Cesarini, Kristina. Fluids and Barriers of the CNS. Sep 2015

Sweden: National Quality Registry for Spinal Dysraphism and Hydrocephalus (MMCUP)

  • A combined surveillance program and quality register improves management of childhood disability. Westbom, Lena; Alriksson-Schmidt, Ann I.; Arner, Marianne; Krumlinde-Sundholm, Lena; Nordmark, Eva; Rodby-Bousquet, Elisabet; Hägglund, Gunnar. Disability and Rehabilitation. Apr 2017
  • A Swedish national follow-up programme for children and adolescents with myelomeningocele. Olsson, Ingrid; Mattsson, Sven; Dahl, Margareta; Wendelius, Maggie; Westbom, Lena; Åström, Eva. Cerebrospinal Fluid Research. Nov 2009
  • Medical problems in adolescents with myelomeningocele (MMC): an inventory of the Swedish MMC population born during 1986-1989. Olsson, I.; Dahl, M.; Mattsson, S.; Wendelius, M.; Aström, E.; Westbom, L. Acta Paediatrica (Oslo, Norway: 1992). Mar 2007

United Kingdom: The United Kingdom Shunt Registry

  • Impact of antibiotic-impregnated catheters on the reduction in operations for cerebrospinal fluid shunt infection since 1995: evidence from the UK Shunt Registry. Pickard, John D; Richards, Hugh K; Seeley, Helen M. Fluids and Barriers of the CNS. Sep 2015
  • Are adjustable valves effective in all ages of patient? Data from the UK Shunt Registry. Richards, Hugh; Seeley, Helen; Pickard, John. Cerebrospinal Fluid Research. Dec 2010
  • Efficacy of antibiotic-impregnated shunt catheters in reducing shunt infection: data from the United Kingdom Shunt Registry. Richards, Hugh K.; Seeley, Helen M.; Pickard, John D. Journal of Neurosurgery. Pediatrics. Oct 2009
  • Do antibiotic-impregnated shunt catheters reduce shunt infection? Data from the UK Shunt Registry. Richards, Hugh; Seeley, Helen; Pickard, John. Cerebrospinal Fluid Research. Dec 2006
  • The United Kingdom Shunt Registry. O'Kane, M. C.; Richards, H.; Winfield, P.; Pickard, J. D. European Journal of Pediatric Surgery: Official Journal of Austrian Association of Pediatric Surgery. Dec 1997

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