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Turner Syndrome Levels of Care Designation Survey - 2021
Turner Syndrome Global Alliance (TSGA) has developed a self-reported tiered designation criteria for Turner Syndrome providers to allow families to fully understand the services available by each provider.
Please answer ALL questions in this survey to determine where your services align with the Levels of Care Designation Criteria. TSGA will use your self-assessed determination to list your Level of Care on our website listing of care providers, clinics, and centers.
This survey refers to the Turner Syndrome Levels of Care Pediatric Designation Criteria document. A copy of this document was included in the email.
We recommend you complete this survey as a Google Form if possible. This survey will take approximately 6 minutes to complete.
* Required
Email
*
Your email
Your Name and Title
*
Your answer
Hospital/Institution
*
Your answer
Best phone number to reach you
*
Your answer
These questions determine your eligibility to be listed as a LEVEL 1 TS Care Provider.
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Yes
No
My TS care program is led by Endocrinologist or Geneticist
My TS care program follows the 2017 TS Care Guidelines
We offer families information on TS Advocacy Groups as a resource. This could include a local support group, TSGA, TSSUS, or TSF.
I answered YES to questions 1-3 and believe that my program qualifies to be listed as a LEVEL 1 TS Care Provider.
Yes
No
My TS care program is led by Endocrinologist or Geneticist
My TS care program follows the 2017 TS Care Guidelines
We offer families information on TS Advocacy Groups as a resource. This could include a local support group, TSGA, TSSUS, or TSF.
I answered YES to questions 1-3 and believe that my program qualifies to be listed as a LEVEL 1 TS Care Provider.
These questions determine your eligibility to be listed as a LEVEL 2 TS Coordinated Care Clinic.
*
Yes
No
My TS care program has a website or a link for patients to schedule.
We follow the KidNECT Care Model. To implement this model, your program must offer Networking, Education, Comprehensive Coordinated Care, and Transition support. Refer to the Designation Criteria document for more information.
We offer same day visits with multiple specialist.
I answered YES to questions 1-3 and believe that my program qualifies to be listed as a LEVEL 2 TS Coordinated Care Clinic.
Yes
No
My TS care program has a website or a link for patients to schedule.
We follow the KidNECT Care Model. To implement this model, your program must offer Networking, Education, Comprehensive Coordinated Care, and Transition support. Refer to the Designation Criteria document for more information.
We offer same day visits with multiple specialist.
I answered YES to questions 1-3 and believe that my program qualifies to be listed as a LEVEL 2 TS Coordinated Care Clinic.
These questions determine your eligibility to be listed as a LEVEL 3 TS Coordinated Care Center.
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Yes
No
We are currently collecting TS data in a REDCap database, OR we are working to implement data collection through REDCap in the next 12 months.
We offer a Transition Program for young adults that coordinates with local adult providers.
We work with our Patient/Family Advisory Council or local organized advocacy representatives to have input from families.
We coordinate access to all TS Specialty Providers (see the list of specialists on the Levels of Care document).
I answered YES to questions 1-4 and believe that my program qualifies to be listed as a LEVEL 3 TS Coordinated Care Center.
Yes
No
We are currently collecting TS data in a REDCap database, OR we are working to implement data collection through REDCap in the next 12 months.
We offer a Transition Program for young adults that coordinates with local adult providers.
We work with our Patient/Family Advisory Council or local organized advocacy representatives to have input from families.
We coordinate access to all TS Specialty Providers (see the list of specialists on the Levels of Care document).
I answered YES to questions 1-4 and believe that my program qualifies to be listed as a LEVEL 3 TS Coordinated Care Center.
A LEVEL 4 TS Regional Resource Center provides all of the resources and services listed above in Levels 1, 2, and 3 AND is engaged in multi-institutional research. If you feel your institution could qualify as Level 4 Center, please respond below and TSGA will reach out to you.
Yes
No
Our TS program is engaged in multi-institutional TS research, has a TS Fellowship/Mentoring Program, and offers resources and support for regional TS Providers, Clinics, and Centers.
I am interested in learning more about designation as a TS Regional Resource Center. Please contact me.
Yes
No
Our TS program is engaged in multi-institutional TS research, has a TS Fellowship/Mentoring Program, and offers resources and support for regional TS Providers, Clinics, and Centers.
I am interested in learning more about designation as a TS Regional Resource Center. Please contact me.
We have identified a patient/family advocate who might be willing to work with the Clinic to represent the needs of the local TS community.
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YES
No
Patient/family advocate name and contact information if available:
Your answer
Please share any questions or comments you may have:
Your answer
Thank you for taking the time to complete this survey. If you have any questions, contact Marybel Good at mgood@TSGAlliance.org or 720 620-6907.
A copy of your responses will be emailed to the address you provided.
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