Research

The Association for Spina Bifida and Hydrocephalus (ASBAH) funds specialised medical and educational research aimed at either improving the treatment of people with spina bifida and/or hydrocephalus or enhancing their quality of life.

We regularly receive submissions for funding for consideration by our expert Medical Advisory Committee, which meets twice a year. Educational research submissions can also be considered for funding.

Current Research Projects

Professor Jim Stevenson, Department of Psychology, University of Southampton.

"The Developmental, Behavioural and Psychological Characteristics associated with Hydrocephalus and Spina Bifida in Middle Childhood"

A growing area of concern to ASBAH is the development of children with hydrocephalus, and how to overcome the educational and psychological problems apparent to parents and teachers.

This study will integrate information on the psychological and behavioural characteristics of children with spina bifida and hydrocephalus, and identify the implications of these findings for education. The study will examine how problems of psychological and motor development arise in children with spina bifida and hydrocephalus, specifically examining components of executive function and testing cognitive abilities.

The research will seek to identify the actions and approaches that are most successful in helping children with hydrocephalus, their carers and teachers cope with their developmental, educational and psychological challenges.

The project is to be a full scientific study over three years, using five groups for comparison purposes, drawing in multi-professional skills. ASBAH has sponsored the research at a cost of ?164,761.

Dr M D Lucock, Division of Paediatrics and Child Health, University of Leeds.

"The Character of Intraerythrocyte Folate Species: Implications for prevention of neural tube defects."

Folic acid is known to be an important vitamin in pregnancy for the prevention of spina bifida, but the reasons for this are not fully known.

Lack of folate in the bloodstream is known to be connected with spina bifida conceptions. This research analyses the complex types of folate in the blood cells of women who have experienced neural tube defect pregnancies, compared with those of unaffected women.

The study is examining evidence that a metabolic defect may lead to abnormal folate status. Techniques have been developed to assess differences in the types of folates present. A blood-screening test will be developed to identify women at risk of a neural tube defect pregnancy because of a metabolic defect.

ASBAH is supporting this research for two years at a cost of ?25,000.

Professor S C Robson, Department of Obstetrics and Neonatology, Royal Victoria Infirmary and University of Newcastle.

"Outcome of Prenatally Detected Mild/Moderate Cerebral Ventriculomegaly."

In hydrocephalus, the cerebral ventricles of the unborn infant become enlarged by the pressure of cerebro-spinal fluid, a condition which can be detected by ultrasound scans. Parents then need specialised advice, particularly when the abnormality is mild or moderate, as to the possible outcome of the pregnancy.

This study will follow the progress of a group of 100 children to the age of two years to see whether antenatal scan results can be a predictor of future developmental progress

ASBAH, with support from Glaxo Wellcome plc, is supporting Professor Robson's research over two years at a cost of ?18,500.

Dr Roger Bayston, City Hospital, Nottingham, and University of Nottingham.

"Research into Cerebro-Spinal Fluid Shunts."

Children and adults with hydrocephalus have a valve or 'shunt' inserted to the head to remove excess fluid which causes pressure.

Infection and blockage can occur rapidly and can be fatal if not diagnosed early. Dr Bayston's research will be concentrating on two main areas:

1. Research into Causes, Diagnosis and Treatment of Infection in Cerebro-Spinal Fluid Shunts - It is often difficult for even a specialist to distinguish between a shunt infection and another problem with similar symptoms, and conventional laboratory tests are not conclusive. Dr Bayston has been studying the antibodies produced in an infection, and a blood test is being developed which promises rapid, reliable diagnosis.
    
2. Treatment of CSF Shunt Infections - Treatment for shunt infection involves surgical removal of the shunt. Dr Bayston is pioneering techniques and drugs which allow treatment of infection in such a way that shunt removal may not be necessary. This will reduce the need for surgery, reducing risks and costs.

ASBAH is supporting these projects at a cost of ?10,000 and has recently awarded a further grant of ?13,000 for the purchase of a luminometer/photometer for use in the research

Dr G M Hunt, Addenbrooke's Hospital, Cambridge

"The Survival and Health of 30-year-old Adults born with Open Spina Bifida"

ASBAH has given extended support for this long-term study of the progress and health of 117 consecutive newborn babies with spina bifida in the Cambridge area.

This study has attracted international interest in its findings on the condition, its effects on individuals, and its social and economic implications. Understanding the long-term results of treatment is essential to the medical management of care of children and adults with spina bifida.

The study records the health of survivors, all main treatments and procedures, achievements in terms of independence, mobility and employment, and major events such as marriage and childbearing. Causes of death are recorded in the cases of non-survivors.

ASBAH is supporting the costs of this research, at its 30-year stage, of ?1,000.

Inquiries about funding should be made to:

Executive Director, Association for Spina Bifida and Hydrocephalus, 42 Park Road, Peterborough, PE1 2UQ, England

Tel: 01733 555988
Fax: 01733 555985
email: andrewr@asbah.org