An evidence-based medicine model for rare and often neglected neoplastic conditions

Clinical article

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  • 1 Division of Spine, Department of Orthopaedics, University of British Columbia and Vancouver CoastalHealth, Vancouver, British Columbia;
  • 5 Division of Neurosurgery, Department of Surgery, University of Toronto and Toronto Western Hospital, Toronto, Ontario, Canada;
  • 2 Unit of Oncologic and Degenerative Spine Surgery, Rizzoli Institute, Bologna;
  • 6 Oncologia Ortopedica e Ricostruttiva del Rachide, Istituto Ortopedico Galeazzi, Milano, Italy;
  • 3 National Center for Spinal Disorders and Buda Health Center, Budapest, Hungary;
  • 4 Department of Neurosurgery, MD Anderson Cancer Center, The University of Texas, Houston, Texas;
  • 7 The CORE Institute, Phoenix, Arizona;
  • 8 Spinal Division, Oxford University Hospitals NHS Trust, Oxford;
  • 12 Center for Spine Studies and Surgery, Queens Medical Centre, Nottingham University Hospitals NHS Trust, Nottingham, United Kingdom; 
  • 9 Departments of Neurological Surgery and
  • 10 Orthopaedic Surgery, University of California, San Francisco, California;
  • 11 Department of Orthopaedics, Princess Alexandra Hospital, Brisbane, Queensland;
  • 14 Monash Institute of Medical Research, Monash University, Clayton, Victoria, Australia; and
  • 13 Department of Neurosurgery, Johns Hopkins University School of Medicine, Baltimore, Maryland
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Object

The National Institutes of Health recommends strategies to obtain evidence for the treatment of rare conditions such as primary tumors of the spine (PTSs). These tumors have a low incidence and are pathologically heterogeneous, and treatment approaches are diverse. Appropriate evidence-based care is imperative. Failure to follow validated oncological principles may lead to unnecessary mortality and profound morbidity. This paper outlines a scientific model that provides significant evidence guiding the treatment of PTSs.

Methods

A four-stage approach was used: 1) planning: data from large-volume centers were reviewed to provide insight; 2) recruitment: centers were enrolled and provided the necessary infrastructure; 3) retrospective stage: existing medical records were reviewed and completed with survival data; and 4) prospective stage: prospective data collection has been implemented. The AOSpine Knowledge Forum Tumor designed six modules: demographic, clinical, diagnostic, therapeutic, local recurrence, survival, and perioperative morbidity data fields and provided funding.

Results

It took 18 months to implement Stages 1–3, while Stage 4 is ongoing. A total of 1495 tumor cases were captured and diagnosed as one of 18 PTS histotypes. In addition, a PTS biobank network has been created to link clinical data with tumor pathology and molecular analysis.

Conclusions

This scientific model has not only aggregated a large amount of PTS data, but has also established an international collaborative network of spine oncology centers. Access to large volumes of data will generate further research to guide and enhance PTS clinical management. This model could be applied to other rare neoplastic conditions. Clinical trial registration no.: NCT01643174 (ClinicalTrials.gov).

Abbreviations used in this paper:AOSKFT = AOSpine International Knowledge Forum Tumor; FFPE = formalin-fixed paraffinembedded; NIH = National Institutes of Health; PTS = primary tumor of the spine; WBB = Weinstein-Boriani-Biagini.

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Contributor Notes

Address correspondence to: Charles G. Fisher, M.D., M.H.Sc., F.R.C.S.C., Blusson Spinal Cord Centre, 6th Floor, 818 W. 10th Ave., Vancouver, BC V5Z 1M9, Canada. email: charles.fisher@vch.ca.

Please include this information when citing this paper: published online September 5, 2014; DOI: 10.3171/2014.7.SPINE13954.

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