Workshop on Setting National Research Priorities in Scoliosis

Douglas Hill, P. Eng. MBA
Clinical Engineer
Edmonton, AB

A workshop focusing on establishing national priorities in scoliosis research was held in Edmonton on December 9, 2005. This was the second meeting of surgeons and scientists interested in advancing scoliosis research from the laboratory to clinical application. It continued in the spirit of the first meeting held in Quebec City in September 2003 chaired by Dr. Hubert Labelle. The attendees in Edmonton adopted the name of Canadian Paediatric Spinal Deformity Study Group.

The meeting coincided with the annual Glenrose Paediatric Orthopaedic days held on December 7 and 8 with Dr. Keith Luk, Head of the Department of Orthopaedics & Traumatology at the University of Hong Kong and Dr. Christopher W. Reilly, paediatric orthopaedic surgeon at BC's Children's Hospital, attending as Visiting Professors. In addition, an evening information session for patients and their families was held during which Dr. Keith Bagnall gave a talk on "What Causes Scoliosis" and Dr. Alain Moreau, Dr. Douglas Hedden, and Dr. James K. Mahood fielded questions from the audience. Questions posed at the family session centred around the broad themes of: what causes scoliosis?, how will having surgery affect my life? and what is my prognosis?

A "Cross Canada Roundup" kicked off the workshop, with a representative from each site providing a brief report on their research goals, the clinical environment, resources available, the most important issues, and how collaboration can occur. Each participant took part in two break-out sessions. The seven break-out topics were: 1) aetiology, 2) databases, 3) surface topography, 4) clinical outcomes, 5) intra-operative monitoring, 6) national networking, and 7) numerical modeling. At the end of the sessions, the participants selected their top priorities from the facilitators' reports.

Highlights from Break-Out Groups1) Aetiology of Idiopathic Scoliosis
The issue is to understand how the curve develops and progresses. Sub-groupings of patients need to be carefully studied as idiopathic scoliosis is not a homogeneous group. Major centres should include a molecular biologist with a proposal that a centre of excellence for molecular biology in scoliosis be located in Montreal.

2) Database (Electronic Health Record)
Development and implementation of a web-based national registry for education and research studies is essential to advancing research in this area. Complimentary work exists across Canada, but standardization is necessary with contributions from all members. A subcommittee was proposed to integrate a database across Canada.

3) Surface Topography (ST)
The role of surface topography in the clinical management of scoliosis is not well defined and thus its use is not wide spread. The rationale for ST is based upon clinical utility (to quantify cosmesis, evaluate treatment outcomes, and education) and research goals (predicting progression, universally accepted 3D measures, replacing some radiographs). Collaboration and "keeping it simple" is important, as ST is not for everybody considering the resources involved, unless ST means fewer radiographs.

4) Clinical Outcomes
A national registry will be very useful to collect data in a standardized way and pool across centres prior to performing research studies. Registries were suggested for brace, surgical and blood studies. The primary clinical outcome themes were indications for surgery, wait lists and to evaluate surgery and bracing. A core set of parameters to collect was presented. In addition to Cobb angles, 3D measurements of both internal and external spinal deformity to describe and track changes are needed.

5) Intra-operative Monitoring
A position statement on the use of Somatosensory Evoked Potentials (SSEP) and Motor Evoked Potentials (MEP) was established. Neuro-monitoring should be standard of care for scoliosis. The aim is to have all centres have these capabilities, and strive for this standard of care.

It is the opinion of the Canadian Paediatric Spinal Deformity Study Group that the current ideal standard of care for paediatric spinal deformity correction should include SSEP and MEP monitoring.

6) National Networking
It is necessary to collaborate to attain clinical, funding, and basic science research goals. Sharing of patient data will strengthen power of studies and allow the study of rare conditions. We must meet as a group to be effective, most likely in conjunction with other meetings. The benefits from collaboration require accurate data to be collected in a standardized way. Those who participate must gain something of value. This may vary for each site. Collecting appropriate data should not increase the amount of time required per patient nor reduce the number of patients seen. It is important to have access to a statistician and research methodologist for the group. A web domain (www.cpssg.ca) has been purchased for the group to communicate and share cases.

7) Numerical Modeling
Relevant research questions are necessary to make best use of numerical models. Models may be helpful to better understand growth mechanisms and scoliosis progression and to develop patient specific innovations resulting in improved treatment methods. Validation is necessary with patient data. Experimental (in vitro) and animal models are helpful when it is not possible to measure with people.

Outcomes of our day
The major accomplishments from the workshop were the position statement of SSEP (Somatosensory Evoked Potentials) and MEP (Motor Evoked Potentials), the desire to collaborate, and the recognition of the need for a national registry with a core set of common outcome measures. We intend to meet again as a group in December 2006 in Edmonton. The web site www.cpssg.ca is on-line with the meeting notes, upcoming meeting dates, and important announcements.

Attendance
Vancouver: Christopher W. Reilly; Calgary: James A. Harder, Jason J. Howard, David L. Parsons; Edmonton: Shannon Allen, Keith Bagnall, Ravi Bhargava, Andreas Donauer, Brian J. Greenhill, Doug Hill, Douglas Hedden, Gisele Lokanc, Edmond Lou, James K. Mahood, Julie Mondoux, Marc J. Moreau; Eric Parent, Jim Raso, Saskatoon: Anne K. Dzus; Winnipeg: Michael J. Goytan, Michael G. Johnson; Kingston: Daniel P. Borschneck; London: Timothy P. Carey; Ottawa: James G. Jarvis, Paul J. Moroz; Montreal: Carl-Eric Aubin, Alain Moreau, Jean Ouellet, Stephan Parent; Halifax: Dr. P. Christopher Cook, Ron El-Hawary

Sponsors:

• Alberta Heritage Foundation for Medical Research (AHFMR)
• Toronto Sick Kids Foundation
• Northern Alberta Benefits Society for Scoliosis (NABSS)
• DePuy Spine - Judd Ekdahl, John Reid, Blake Bell, John Berlett, Neil Da Silva and Guy Laplante
• Metronic Sofamor Danek - Scott Sowa, Jon Abrams, Stephen Ekmekjian and Cam Kachorek
• Stryker - David Newman, and Greg Turner
• Synthes Canada - Michael Mikola, Katie Drohan and Natalie Kipling