Supported research projects

National survey of the ‘Paediatric Video Telemetry’ units in UK.


https://www.surveymonkey.com/s/VTinfrastructure

https://www.surveymonkey.com/s/VTadmission

Investigator: Dr Richard E. Appleton , Consultant Paediatric Neurologist, Roald Dahl EEG unit, Alder Hey Children’s NHS Trust

CBR Support: Promotion and administrative support.

Neurologists’ views regarding the use of Whole-Genome Sequencing in their clinical proactice and the return of results to their patients


Investigator: Professor Béatrice Godard, PhD , Université de Montréal, , Canada,

CBR Support: Promotion and administrative support.

Non-invasive measurement of intracranial pressure and cerebral oxygenation in paediatric brain injury

Investigator: Dr Stephen Ray, Department of Neurosciences, Alder Hey Children’s NHS Foundation Trust . 

CBR Support: Seed funding award of £5,000

Genetics of Childhood Nystagmus

Investigator: Mr Jay Self, paediatric ophthalmologist at Southampton General Hospital and senior lecturer in ophthalmic genetics at the University of Southampton. 

CBR Support: Seed funding award of £3500

Brain Function in Rolandic Epilepsy

Investigators: Drs Colm McGinnity and Anna Smith, Institute of Psychiatry, King’s College London

CBR Support: Networking and research site recruitment; NHS R&D approvals at centres (2013-    )

Characteristics and outcomes of childhood moyamoya in the United Kingdom

Investigators: Drs Vijeya Ganesan and Dawn Saunders, UCL Institute of Child Health and Great Ormond Street Hospital

CBR Support: Governance applications, data transfer and registry management (2013-  )

Investigating the phenotype and genetic architecture of myoclonic astatic epilepsy (MAE)

Investigator: Dr Shan Tang, Institute of Psychiatry, King’s College London

CBR Support: Networking and research site recruitment; NHS R&D approvals at centres, registry support (2013-    )

The molecular genetic investigation of early onset epileptic encephalopathy

Investigators: Dr Amy McTague and Dr Manju Kurian, Institute of Child Health, UCL.

CBR Support: Funding provided for a pilot genetic study that has already led to substantial further funding from the MRC and study extrension (2011-12)

Multinational European Trial for Children with the Opsoclonus Myoclonus Syndrome/Dancing Eye Syndrome.

Investigator: Dr Mike Pike, John Radcliffe Hospital, Oxford.

CBR Support: Funding, ethics and clinical trial applications – all successful (2009-2013)

Genetics of Cortical Malformations

Investigators: Dr Andrew Fry & Dr Daniela Pilz, Cardiff University.

CBR Support: Publicity and networking to aid patient recruitment (2010-2012). Download study information.

Web: MRC Centre for Neuropsychiatric Genetics and Genomics

VIPS – Vascular Effects of Infection in Paediatric Stroke

Investigator: Professor Fenella Kirkham, Institute of Child Health, University College London.

CBR Support: Patient information sheets, consent forms and other documents essential to UK governance approval (2012)

Association between ADEM and vitamin D

Investigator: Dr Christos Zipitis, Wrightington, Wigan and Leigh NHS Foundation Trust.

CBR Support: Networking with the PUDDLS study group and MRC Human Nutrition Laboratory Cambridge, planning and protocols for biological sample preparation and transfer (2010-    )

Paediatric UK Demyelinating Disease Longitudinal Study (PUDDLS)

Investigators: Dr Evangeline Wassmer and Dr Michael Absoud, Birmingham Children’s Hospital.

CBR Support: Contributed to study protocol, recruitment of collaborating centres and regional NHS Trust R&D approvals (2008-2011)