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

1. October 2012

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. 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!

4. Benefits of Quality
Improvement (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. 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!

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. 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. 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. 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. 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. 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.

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. Tier 2: Quality Improvement
Initiative
 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. 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!

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
mmarks@ssshsg.org or
520-529-2546.