All Turner Syndrome patients ages 12-25 are able to support research through this online survey! Check out this research opportunity from Nisha Patel, a two-year endocrinology fellow at Nationwide Children’s Hospital in Columbus, Ohio. She is studying the transition from pediatric to adult medical care. If you participate, you have a chance to win a $100 gift card and make a difference in the TS community! Nisha’s study shows that it is easy to make a positive impact on the TS community with the power of research.
About Nisha Patel
Hello, TSF community! I am Nisha Patel. In July 2018, I began my endocrinology fellowship at the Nationwide Children’s Hospital in Columbus, Ohio, and I have loved every minute of it! I have a strong interest in developing innovative strategies to educate patients about their medical conditions, especially patients who are growing into adults.
During my fellowship, I have been drawn to TS patients because of their captivating personalities and resilience. While caring for these patients, I noticed that their transitions from pediatric to adult care were often rough, due to a lack of medical resources and care available to them to help them transition. As a result, they often had poor medical outcomes. So, my partners, Leena Nahata and Shanlee Davis, and I creted a research project meant to address this problem.
Thank you, TSF and Nationwide Children’s Hospital, for giving me this great opportunity to share this research project and work with the TS community!
About the Turner Syndrome Transition Study
In general, the purpose of this study is to identify factors that improve the transition from pediatric to adult medical care for patients with TS.
Our study’s goals are to:
- improve the transition process by identifying transition readiness factors that can be addressed in medical visits to best prepare TS patients for transition;
- improve medical outcomes for the TS community, both during and after the transition period; and
- validate the TS-specific Transition Readiness Assessment Questionnaire (TS-TRAQ ) to further support its use among providers.
To participate, you must be:
- a patient with TS,
- between 12 and 25 years old,
- able to read and understand English, and
- able to complete the study on your own.
As long as you meet these requirements, you can participate in the online surveys, which are described below.
As a participant, you will take three, brief online surveys, which will ask about:
- your diagnosis, and
- your transition readiness skills.
Why Should You Participate in the Turner Syndrome Transition Study?
With the surveys, you can:
- help researchers identify areas that should be focused on to improve transition from child to adult care;
- see which factors associate with more successful transitions, helping the TS community; and
- have a chance to win a $100 gift card (after the survey’s completion on November 15th, the winner will be drawn)!
Contact Nisha Patel at:
- (614) 722-4935
Take the survey at this link:
We look forward to hearing from you!
Want to learn more about research opportunities? Check out our previous articles AJ’s TS Research Project and Turner Syndrome Research Opportunities.
Do you about any other research opportunities that can aid the Turner Syndrome community? Contact us at firstname.lastname@example.org.
If you are looking for participants for your Turner Syndrome research, please contact us at email@example.com.
Written by Elizabeth (Liz) Rivera, Turner Syndrome Foundation (TSF) intern and blog writer.