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International Federation for Spina Bifida and Hydrocephalus
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Philosophy of the IF projects

Hydrocephalus in developing countries

Spina Bifida in developing countries

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Evaluation of the IF projects

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Developing countries

Research in developing countries

Dr Warf in action

As an international organisation promoting the exchange between the North and South, IF recognises and stresses the importance of research and data collection. Research on the incidence is necessary to establish adequate primary prevention systems. Research on the medical and/or rehabilitative care of the conditions can contribute to a better and more cost effective care, in the South as well in the North. Some of the IF projects are already developing research programmes or contributing to the collection of data for future benefit to people with Spina Bifida and/or Hydrocephalus in the South as well as in the North.

- Research on use of ETV in children with Hydrocephalus: a study from the IF project at CURE Children’s Hospital of Uganda, which was published in 2004, demonstrates the results for ETV (endoscopic third ventriculostomy) as the primary treatment in 300 children with hydrocephalus. This is the largest study of its kind to be reported. It was found that infection in the neonatal period was the single most common cause of hydrocephalus in Uganda. 

- Management of the neurogenic bladder in children with spina bifida and after spinal trauma: in cooperation with 3 local partners and the KUL (Catholic University Leuven), IF compares the renal and bladder function in children who were treated and followed proactively in the first 2 years of life with children whose treatment was delayed longer than 3 years until the continence problem became an issue. Through thorough documentation with the collected data, IF hopes to proof that with ultrasound and retrograde cysturethrogram, associated with a simplified cystometric evaluation, early detection of the hostile bladder is possible and can substitute standard urodynamics.


IF contributions to research projects:

- Combined endoscopic third ventriculostomy and choroid plexus cauterization for Hydrocephalus in infants and children with special emphasis on the developing world. Dr. Warf, BC

- Quality of life for families with spina bifida in Kenya. Trop Doct.2008; 38: 160-162 by van't Veer et al. under supervision of Dr Poenaru and Dr Bransford

- Clean Intermittent Catheterization: Overview of Results in 194 Patients with Spina Bifida. Agnes Jeruto RN, Dan Poenaru, Richard Brainsford
Published in The African Journal of Paediatric Surgery

- Hydrocephalus in Uganda: the predominance of infectious origin and primary management with endoscopic third ventriculostomy. Dr. Warf, BC. Journal of Neurosurgery (Pediatrics 1) 102:1-15, 2005.

- Comparison of 1-year outcomes for the Chhabra and Codman-Hakim Micro Precision shunt systems in Uganda: a prospective study in 195 children, Dr. Warf, BC:  J Neurosurg (Pediatrics 4) 102:358-362, 2005

Comparison of third ventriculostomy alone and in combination with choroid plexus cauterization in infants younger than 1 year of age: a prospective study in 550 African children, Dr. Warf, BC: J Neurosurg (Pediatrics 6) 103:475-481, 2005

- Warf BC, Campbell JW. Combined endoscopic third ventriculostomy and choroid plexus cauterization (ETV/CPC) as primary treatment of hydrocephalus for infants with myelomeningocele: Long-term results of a prospective intention to treat study in 115 African infants. (In press, Journal of Neurosurgery Pediatrics, November 2008)

- Neural tube defects in Dar es salaam, a preliminary study to provide a working estimate on the incidence and the pattern of neural tube defects at the Muhimbili National Hospital. ADA Kinasha and Karim Manji. Dr. Kinasha won the price for best Poster presentation at the conference of ' the Society for Reserach into Spina Bifida and Hydrocephalus', July 2002 

- POST INFECTIOUS HYDROCEPHALUS: The Most Common Cause of Hydrocephalus in Uganda. Benjamin C. Warf, M.D. Lynda MacGowen, R.N.

- ENDOSCOPIC THIRD VENTRICULOSTOMY: Initial Experience at CURE Children's Hospital of Uganda. Benjamin C. Warf, M.D and Lynda MacGowen, R.N. 

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