SPINE SURGERY REGISTRIES

• Swedish Spine Register (SweSpine)

  Date of establishment: 1992. Website: http://www.4s.nu.
  A national register (Sweden) to record all types of spine operations countrywide. This nonprofit organization is run by the country's spine surgeons (orthopedists & neurosurgeons) with the goal of promoting high-quality spine surgery care in Sweden according to treatment guidelines supported by evidence-based medicine (EBM). The overarching objective of the Swedish Society of Spinal Surgeons is expressed as "to promote collaboration among spine surgeons in Sweden and Scandinavia in order to achieve benefits for patients, doctors, clinics and the healthcare system". As of end of 2011, the Swedish Spine Register has nearly 9000 recorded patients. Historically, it was introduced in 1992 at the meeting, “The Degenerative Lumbar Spine” in Lund during an evaluation symposium led by Gunnar Andersson. At that time the register involved a short form completed by doctors, which was also presented in Acta Orthopaedica Scandinavica 1993 (Strömqvist & Jönsson 1993). Prospective data registration was not common then and was welcomed by most of the spine surgeons in Sweden. Initially, only 4-6 departments began recording data in the early years during the mid-1990s. Consequently, Peter Fritzell, Olle Hägg, Bo Jönsson and Bjorn Strömqvist, who were all interested in establishing a register, formed a group to analyze the problems and suggest improvements. In the late 1990s, responsibility for the spine register was transferred to the Swedish Society of Spinal Surgeons. A largely patient-based online registration form was designed to address preoperative and postoperative variables. In addition, Carina Blom and Lena Oreby developed and provided support services over time. These modifications changed the scene and beginning in the late 1990s, the number of participating departments increased, varying over the past decade between 35 and 39 of 42-45 departments providing spinal surgery services in Sweden.Currently, the treasurer of the Swedish Society of Spinal Surgeons provides financial administration and officially maintains the Spine Register.  The treasurer is also the controller of personal data (in compliance with the Swedish Data Protection Act), responsible for patient contacts and entering changes in the register database. Patients are entitled to see their personal information and if they find any errors they may request corrections from the controller of personal data. Information will be posted on this website if someone else should assume this responsibility in the future.
  

• Spine Tango

  Date of establishment: 2002. Website: www.memdoc.org.
  Spine Tango is the first international, non-commercial documentation system for spinal surgery in form of a registry under the auspices of EuroSpine - The Spine Society of Europe. It is the biggest international spinal registry to date. It is to the benefit of patients and physicians whilst generating evidence based findings to improve spinal care. Its aim is to assess the safety and efficacy of all surgical interventions of the spine. Is is in collaboration with the Institute for Evaluative Research in Medicine of the University of Bern. It enables national societies to control their own part of the registry. For that a technology called "national module concept" has been implemented to enhance participation options and to provide the hardware structure for appropriate security measures for patient and user privacy protection. As of 2012, the Swiss/International, Austrian, German, Italian, North American, Mexican and Brazilian Spine Tango Modules are fully operating.
  

• Rick Hansen Spinal Cord Injury Registry

  Date of establishment: 2004. Website:http://www.rickhansenregistry.org.
  The Rick Hansen Spinal Cord Injury Registry is part of the Translational Research Program of the Rick Hansen Institute, which is a Canada-wide collaboration of people with SCI, researchers, health care professionals, and service providers committed to minimizing disability and maximizing quality of life for people with SCI. The launch of The Rick Hansen Spinal Cord Injury Registry in 2004 heralded the initiation of the first nation-wide SCI patient registry within Canada. As of 2012, the registry is being implemented in 31 major Canadian acute care and rehabilitation hospitals in 14 cities located in 9 provinces in Canada, and there are over 1500 individuals who have sustained an acute traumatic SCI registered. It tracks the experiences and outcomes of people with traumatic spinal cord injuries (SCI) during their journey through acute care, rehabilitation and community reintegration. Details about participants' spinal cord injuries including extent of injury and level of paralysis, recovery, and success of various treatments are among the data recorded. Data are captured from the pre-hospital, acute and rehabilitation phases of care, and participants are followed in the community at 1, 2, 5 and then every 5 years post-injury. This data is stored in a central location, with individual privacy and security of information rigorously ensured. It can then be used by researchers and clinicians to better understand SCI and the effectiveness of specific treatments, practices or programs for improving functional outcomes and quality of life after SCI. As well, the Rick Hansen SCI Registry and its powerful data collection tools are being used as a platform to support important new multi-centre clinical trials for SCI.
  

• The National Neurosurgery Quality and Outcomes Database (N2QOD)

  Date of establishment: 2012. Website:http://www.neuropoint.org/NPA%20N2QOD.html.
  The National Neurosurgery Quality and Outcomes Database (N²QOD) serves as a national clinical registry for neurosurgical procedures and practice patterns in USA. It is one of the NeuroPoint Alliance projects. The registry tracks quality and provides groups with the immediate infrastructure for analyzing and reporting quality of care. The goals of the registry include to establish risk-adjusted national benchmarks for cost and quality for common neurological procedures as well as to allow researchers and physicians to analyze data and outcomes in real time.
  

• British Spine Registry

  Date of establishment: 2012. Website: http://www.bsrcentre.org.uk.
  The British Spine Registry is a web-based database for the collection of information about Spinal Surgery in the UK. The British Scoliosis Society supported a web based scoliosis registry in 2003. At the Britspine meeting in 2004 all four British spine societies (BSS, BASS, BCSS, SBPR) agreed to expand this to include all spinal surgical procedures in the United Kingdom. An extensive marketing and promotional campaign was targeted at all members of the four societies, and online and telephone support was provided. Then, 73 surgeons from 55 centres in Britain entered patient data on 1410 surgical episodes between November 2004 and December 2007. A revival of the British Spine Registry was announced on the 3rd May 2012 at the Britspine Conference, Newcastle. Over 90 Consultant Spinal Surgeons expressed an interest. Following comments and suggestions from the Membership, significant changes have been made. The Registry launched successfully on May 2012. The aim of the British Spine Registry is to improve patient safety and monitor the results of spinal surgery. The information held on the registry is expected to find out which are the best and the most effective types of spinal surgery. We need your help to improve spinal surgery in the UK.
  

• NASS Spine Registry

  Date of establishment: 2012.
  The North American Spine Society plans to launch a pilot registry program next month to collect data on spine treatment clinical outcomes. The registry's goal is early detection of spinal problems that deserve further study. The NASS registry pilot has been funded by NASS to get the ball rolling in collecting data for the improved treatment of all spine patients. If the pilot study is successful, a permanent registry with other funding sources is expected to follow. The current registry's categories include patient demographics, patient outcome measures and process measures.
  

• SMISS Registry

  Websit: http://www.smiss.org/smiss-registry.
  The Society for Minimally Invasive Spine Surgery teamed with Globus Medical last year to create the SMISS Data Registry for the Treatment of Degenerative Lumbar Spondylolisthesis, Degenerative Disc Disease, Spinal Stenosis and Degenerative Scoliosis. It is the first prospective registry to evaluate minimally invasive spine surgical patient outcomes exclusively. The registry captures prospective clinical data from 10 to 15 clinical sites across the United States for studies focused on quality of life, outcomes, adverse events, fusion rates and costs associated with the minimally invasive approach. Choll Kim, MD, was the executive director of SMISS when the registry was launched in October last year.
  

• Indian Spine (Surgery) Registry

  Website: http://www.assi.in/assi_spine_india.php.
  As of 2012, Association of Spine Surgeons of India (ASSI) declared their interest to have a spine registry with the sponsorship of Synthes.
  

• AO Spine Non Fusion Registry

  The AO Foundation and its AO Spine have launched a comprehensive spine registry, ongoing, observational clinical database. Physicians and researchers can use the registry to develop evidence-based information about the risks and benefits of spine surgery to improve patient outcomes. The organization encourages surgeons to assist in the collection of clinical data and the data collected is expected to include long-term clinical programs that are anticipated to proceed for around 20 years. The registry will include patients who have fusions, arthroplasty, corpectomy, vertebroplasty and kyphoplasty, as well as treatment for fractures and deformity. The organization has a regional board in North America.
  

• Chest Wall and Spine Deformity Registry

  John Smith, MD, a physician at the University of Utah, created the Chest Wall and Spine Deformity Registry for surgeons to access data about patients with chest wall and spinal disorders. The registry focuses on patients with thoracic insufficiency syndrome who are treated with a verticular expandable prosthetic titanium rib. The registry aims to provide surgeons with retrospective and prospective data to study spinal disorders.
  

• National Spine Network Spine Registry

  The National Spine Network is a non-profit, integrated spine registry and clinical trial network formed in 1994. The organization's mission is to improve quality of care, productivity of the spine care provider and cost-effectiveness of spine research. NSN has also developed a sophisticated informatics platform, SpineChart, to collect physician and patient data. Originally, the group was focused on large, academic and research-oriented practices recognized as centers of excellence for spine care, but in 2006 expanded its vision to include smaller community-based practices as well. Between 1995 and 2004 the registry gathered information for more than 60,000 patients and members have published several papers in peer-review journals using the data.
  

• Scoliosis Outcomes Database Registry

  Baron Lonner, MD, is the principle investigator for the Scoliosis Outcomes Database Registry at NYU Langone Medical Center Musculoskeletal Research Center. The registry will allow physicians and researchers to analyze long-term outcomes of surgical treatment of idiopathic scoliosis of all curve patterns. Patients will undergo either anterior or posterior procedures, and the registry will also collect long-term outcomes of nonoperative idiopathic scoliosis patients.
  

• Scolisoft Scoliosis Database

  Website: http://www.scolisoft.org. Scolisoft is the largest international, online, spinal deformity database and the only database that carries clinical photographs of surgical patients taken before and after surgery. It also shares information on how each case was treated and the results experienced by each patient. The database includes case and outcomes data for different types of treatments for Adolescent Idiopathic Scoliosis, along with images of the patients' spine. Anyone can access the information by logging onto the website as a "guest." Physicians can add cases to the database by becoming a registered user of the site. Each physician requesting a "registered user" status must submit a complete case, and all cases are put through an extensive review before publishing in the database.
  

• The Spine Registry

  Kaiser Permanente's Spine Registry was developed to track specific spinal implants including pedicle screws, total disc replacement, anterior cervical plates and Bone Morphogenetic Protein (BMP). In addition to implants, this registry captures procedures, diagnosis, fusion approach, patient demographics and complications including infection, VTE, reoperation, durotomy, pneumonia, myocardial infarction, respiratory failure, and epidural hematoma. Like many of our newer registries, the Spine Registry is based exclusively on electronic data extraction.The registry gathers data on patient satisfaction and pain scores, and currently all Kaiser medical centers in Southern California and one in Northern California participate in the registry. The physicians and researchers hope registry information will help them determine the best techniques and implants for their patients.
  

• Vanderbilt Prospective Spine Registry

  The Vanderbilt Prospective Spine Registry is a part of the Spinal Column Surgical Quality and Outcomes Research Laboratory at Vanderbilt University Medical Center in Nashville, Tenn. Physicians and researchers use data from the spine registry to evaluate results of the prospective diagnoses. The laboratory aims to improve neurological outcomes, functional capacity and quality of life for patients, as well as examine and improve patient safety, efficiency and cost-effectiveness. Their retrospective database and prospective patient registries help achieve their goals in this process.
  

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