SSSF Database User Program


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The Setting Scoliosis Straight Foundation is a not-for-profit established in 2008. Its purpose is to enable fundraising efforts by the Harms Study Group membership to further support and advance techniques in the treatment of spinal deformities in children and adolescents.

The Setting Scoliosis Straight Foundation is in its infancy. This initial campaign establishes a solid financial bedrock and provides momentum for future growth. The current impact on improving patient outcomes through the Harms Study Group research efforts has been significant. The group's work, though impressive, is certainly not complete.

The surgeons who devote their time to the Harms Study Group remain focused on its commitment to be internationally recognized for the highest quality published research on new spinal deformity surgery techniques. There are, however, many more questions than answers, and spinal deformities continue to affect the lives of many young people who can and should have a chance at a better life.

Visit our website to learn more about our foundation and research.

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SSSF Database User Program

  1. 1. October 2012
  2. 2. What are benefits of research? Advancements in treatment techniques Contributions to your field Improved safety All of these lead to improvements in patient care!
  3. 3. What are challenges of conductingresearch? Limited resources: staff, funding, time Difficult initiation: protocol development, IRB processes Lack of database tools Yet you have sufficient patient volume to potentially answer important clinical questions!
  4. 4. Benefits of QualityImprovement (QI) Initiatives Self audit of practice:  Identifies areas for improvement  Exemplifies commitment to successful outcomes  Documents practice pattern improvements Challenges:  Inability to easily capture and record data  Lack of benchmark data for comparison
  5. 5. Setting ScoliosisStraightFoundation We are a non-profit organization. We were established to support research advancing treatment of spinal deformities. We support the work of the Harms Study Group. We own the intellectual property of an innovative database building tool. We are now offering the Database User Program!
  6. 6. Database User Program Our program is being offered to assist surgeons who want to collect systematic data on their patients. Our program assists with innate challenges of conducting research. There are two tiers to our program:  Tier 1 – RESEARCH TOOL;  Tier 2 – QUALITY IMPROVEMENT INITIATIVE.
  7. 7. Tier 1: Research Tool Our design facilitates surgeon collaboration and data collection for the purpose of research production. Our design provides standardized research protocols and case report forms for the prospective study of: ○ Adolescent Idiopathic Scoliosis, ○ Scheuermann’s Kyphosis, ○ Scoliosis in Cerebral Palsy, ○ Spinal Deformity in Marfan’s Syndrome.
  8. 8. Tier 1: Research Tool Establish your site in our user-friendly, web-based research database. Our database is designed for easy data entry and easy data extraction.
  9. 9. Tier 1: Research Tool You will have the ability to query and export data when you need it with our robust user-friendly query tool. We can query your data for you and provide quarterly updates on your data. A yearly dashboard report will provide an assessment of how your site’s data compares to other sites.
  10. 10. Tier 2: Quality Improvement Initiative Our database tools:  Assist surgeons who are interested in collecting a ‘minimal dataset’ on AIS patients;  Help define how your quality & safety measures compare with your peers;  Can be submitted to your institution as a quality improvement initiative along with a waiver of consent.
  11. 11. Tier 2: Quality ImprovementInitiative Our tools are HIPAA compliant and patient data is de- identified. We use a minimal dataset for patients receiving surgery for AIS.  Pre-op data: ○ Age, height, weight, gender, major curve Cobb angle, best bend correction of major curve;  Peri-operative data: ○ Month/year of surgery, upper and lower instrumented vertebrae, surgical approach (anterior, posterior, both), blood loss, operative time, neuro-monitoring alert/new post op neuro-deficit;  Post-op data (6-12 week time point): ○ Any and all complications (infection, neuro-deficit, other), major curve Cobb angle. Please note: the data collected for QI purposes is not intended for research.
  12. 12. Tier 2: Quality Improvement Initiative We also offer a yearly assessment of how your site’s data compares with other de-identified sites (some are top surgeons in the US).This valuable benchmark data is unique to Setting Scoliosis Straight Foundation!
  13. 13. Tier 2: Quality ImprovementInitiative Quality reports & Self audit information can be used by the individual practitioner for:  Contract negotiations with insurers  Quality control discussions with hospital administrators  Practice promotion Extremely valuable benchmark data!
  14. 14. Database User ProgramCosts: Custom research database building ranges from $50K to $150K, but why start from scratch? Our yearly subscription fees are reasonable:  Tier 1: Research Tool = $5K;  Tier 2: QI Initiative = $1K. Gain leverage from the expertise and experience of the most successful multicenter spinal deformity research group in existence!
  15. 15. Further Customization If your needs lie between our two-tier options, let us design a custom program to suit your needs.  Are you studying adult spinal deformity?  Are you studying other diagnoses?  We can design a custom program for you! We strongly believe in the benefits of:  Collecting data;  Reviewing the findings;  Making improvements/adjustments.  All of these serve the goal of providing better care for all of our patients! For further details, contact Michelle Marks at or 520-529-2546.