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:
- The European Network of Centres for Pharmacoepidemiology and Pharmacovigilance
- Patient registries of Europe
These are the registries we have found relating to shunt surgery
- Sweden
- United Kingdom
(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