The symposium is co-organised by The Ann Conroy Trust, in association with Aesculap Academia.
The Ann Conroy Trust is Registered Charity No: 1165808.
We provide Support, Education and Research for patients living with Chiari Malformation, Syringomyelia and associated conditions.
F3 Proposal to establish a UK Chiari registry (UK-CIR)
Piper RJ, Magdum SA, Jayamohan J.
The evidence base for managing Chiari I malformation (CM-I) currently consists of relatively small, single-centre and/or retrospective studies. The lack of high quality data poses challenges to our understanding of the condition and its optimal management, as well as the creation of reliable clinical guidelines and planning for service provision. We therefore propose to establish a UK Chiari I Registry (UK-CIR)’.
The objective of the UK-CIR is to prospectively acquire UK-wide data for patients with CM-I in order to: 1) report the current UK-wide epidemiology of CM-I; 2) determine the number of patients treated for CM-I in the UK and to examine variances in practice; 3) investigate the short and long-term outcomes following conservative and surgical managements of CM-I.
The proposed UK-CIR is a UK-wide, multicentre, prospective and observational data registry. All UK neurosurgical units will be invited to participate. The UK-CIR will follow the British Neurosurgical Trainee Research Collaborative (BNTRC) model for multicentre collaborative research. All neurosurgically-naïve patients (paediatric and adults) with CM-I are eligible to be enrolled. Anonymous data will be directly recorded into an electronic, online database system. Local investigators will have full access to their local data in order to facilitate local audit, but not the data of other participating units. The data collected in the UK-CIR is divided into four phases: 1) demographic data; 2) presentation data; 3) surgical data; 4) outcome data. Data from phases 1 and 2 will be collected preoperatively. Data for phases 3 and 4 will be collected postoperatively at 1, 5 and 10yrs. The UK-CIR will initially be piloted in at least two UK neurosurgical units before it is offered out nationally.