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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. http://www.settingscoliosisstraight.org
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DATABASE USER PROGRAM
October 2012
What are benefits of research?
Advancements in treatment techniques
Contributions to your field Improved safety
All of these lead to improvements in patient care!
What are challenges of conducting research? 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!
Benefits of Quality Improvement (QI) Initiatives
Self audit of practice: Identifies areas for improvementExemplifies commitment to successful
outcomesDocuments practice pattern improvements
Challenges:Inability to easily capture and record dataLack of benchmark data for comparison
Setting Scoliosis Straight Foundation
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!
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.
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.
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.
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.
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.
The goal is to allow
surgeons to indentify
areas with opportunities
for improvement.
Tier 2: Quality Improvement Initiative
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.
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!
Tier 2: Quality Improvement Initiative
Quality reports & Self audit information can be used by the individual practitioner for:Contract negotiations with insurersQuality control discussions with hospital
administratorsPractice promotion
Extremely valuable benchmark data!
Database User Program Costs:
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!
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 [email protected] or520-529-2546.
