SD Fund-Sanford CoRDS Questionnaire Instructions
As many of you know, The Scheuermann's Disease Fund has partnered with the Coordination of Rare Diseases at Sanford (CoRDS) to develop a questionnaire designed to collect data on the secondary health problems that patients with Scheuermann's develop as we age.
Well, we are proud to announce that the QUESTIONNAIRE IS NOW COMPLETE AND READY FOR YOUR INPUT.
Please consider completing the questionnaire (age 18 and over with SD) and providing researchers with important data about Scheuermann’s.
CoRDS collects and maintains data for many rare diseases and is highly regarded by researchers in the scientific community.
It is hopeful that the data collected with positively affect treatment protocols for aging and older patients.
This is an exciting time for all of us who have struggled with Scheuermann’s as adults and have had difficulties finding medical specialists who understand our health problems with this spinal deformity as adults.
That is why obtaining this information is SO important:
the data may aid the medical community and researchers on better understanding the associated secondary effects from Scheuermann’s disease as we age is so important. It may be the catalyst in updating the protocols for treating adults with this spinal deformity.
Here are the important questionnaire/registry highlights:
Each participant is assigned a Global Unique Identifier that enables de-identification of the data when shared with approved researchers to protect the patient's privacy. This means that your name and other identifying information will not be passed on.
The de-identified data will be shared only with researchers approved by Sanford's Scientific Advisory Board (SAB).
The registry is compliant with the European Union General Data Protection Regulation (GDPR). Importantly, the participant owns his/her personal data and can withdraw the data from the registry at any time.
There is no cost to the participants.
Providing your consent to The Scheuermann’s Disease Fund to have access to the data you provide will allow us to better understand Scheuermann’s disease, help us understand where to drive our research initiatives, and let us know how patients need more support.
Here are the instructions and steps to follow to complete the questionnaire:
Set Up A CoRDS Profile
Complete the CoRDS activation form. Please use a computer or tablet.
Create a username, password, and setup a security question. Once completed, click the LOGIN button to login to your CoRDS Patient Registry Profile.
Complete CoRDS Standard and Scheuermann’s disease Questionnaire
The questionnaire will take about (30 minutes for each questionnaire) to complete. In the Patient Registry Profile, click the CONTINUE ENROLLMENT button near the top of the screen. Click on the SAVE & NEXT button in the upper right-hand corner of the screen to proceed to the next set of questions.
Once you have answered all the questions, click SUBMIT and you've completed the questionnaire! That's it. Remember, you can always login to update your answers at any time.
Thank you for taking the time to complete the questionnaire! You have made an important contribution to Scheuermann’s disease research.
We also wanted to thank those of you who submitted questions, suggestions, and changes to each of the drafts as the questionnaire was being developed.
Special thanks to the Project Committee for the Questionnaire, who include:
Dr. Jason Lowenstein - Orthopedic Spine Surgeon and Advisory Board Member for The Scheuermann's Disease Fund (https://jasonlowensteinmd.com)
Mike Fiddle - certified Integrative Nutrition Health Coach and "Heal with Mike" (https://www.sdfund1.org/nutritional-guides-healing-w-mike) at The Scheuermann's Disease Fund
Ethan Waisberg - medical school student at University College Dublin in Ireland and is involved in medical research at the Hospital for Sick Children in Toronto, CA
Jonathan Quissenberry - owner of ETI, LLC. and is an Environmental Engineer
Angela Resetar Lahaie - Nurse Practitioner whose father and 4 other relatives are affected by Scheuermann's including Angela and Angela's daughter.
Brian Thueme - worked 20 years in B2B sales and holds Masters Degrees in Business Administration and Library Science
*Special thanks to Alyssa Mendel, Senior Clinical Research Specialist, Coordination of Rare Diseases at Sanford (CoRDS). Alyssa has been responsible for this program and allowing researchers to collect important data on how it affects our quality of life as we age. Thank you, Alyssa.
Each of our committee members either suffers from Scheuermann's or has a loved one(s) who suffers from the disease. We thank them for their help and dedication during this difficult time.