COVID-19 has undeniably has a profound impact on all members of society. Until this point, we haven’t been able to describe the impact on those who have Turner Syndrome specifically. Now, a study by NIH researchers will help us understand the way in which COVID has impacted those who have rare conditions, including TS! This study is organized by the National Institutes of Health’s Dr. Beth Kozel, Dr. Robert Hufnagel, and Dr. Tiffany Powell-Willey.
Please read the article to learn how to participate, so we can make the voices of the TS community heard!
What is this study about?
This study is about how COVID-19 affects people with and without rare health conditions like Turner Syndrome.
Specifically, the goals of this study are to:
- Discover whether having Turner Syndrome or another rare condition increases or decreases the severity of COVID-19 symptoms;
- Find out how the pandemic has affected people with rare health conditions and people without these conditions; and
- Understand how race, class, gender, sexuality, and other sociodemographic factors affect how severe the effects of the COVID-19 pandemic will be for someone compared to others who don’t have them.
Who are the researchers?
The researchers of this rare disease study are:
- Beth Kozel, M.D., P.H.D., a clinical geneticist and director of NIH’s Laboratory of Vascular and Matrix Genetics at the National Heart, Lung and Blood Institute, as well as the Williams Syndrome Clinic at Washington University School of Medicine/St. Louis Children’s Hospital;
- Robert Hufnagel, M.D., P.H.D, the Chief of the National Eye Institute’s Medical Genetics and Ophthalmic Genomics Unit and Ophthalmic Genomics Laboratory; and
- Tiffany Powell-Willey, M.D., M. P. H., the tenure-track investigator in NHLBI’s Cardiovascular Branch of Division of Intramural Research.
About the Survey
This rare disease study is an online survey, which is offered in English and Spanish. The survey takes around 30 minutes.
In this survey, answer a series of questions that ask questions like:
- What health conditions do you have?
- Are they a common or rare health condition?
- Have you tested positive for COVID-19, if you have been tested at all?
- If yes, what symptoms have you had?
- How has having COVID-19 affected your physical and financial wellbeing?
- How has having COVID-19 affected your access to social services?
- Has the pandemic impacted you, even if you don’t have COVID-19? If so, how?
- What is your race, class, gender, etc.?
- Where do you live? Do you live in a rural or urban area?
- How has where you lived affected how COVID-19 and the pandemic affected you?
There will also be an optional follow-up survey in 6 months.
Who can participate
- Anyone who has Turner Syndrome, or another rare condition
- Anyone who lives with someone who has TS
Please participate, whether or not you have been exposed to COVID-19.
Why Should I Participate in This Study?
By supporting this study by taking the survey, you are:
- Eligible to win a gift card;
- Helping scientists understand how people with various rare health conditions and diseases are affected by the pandemic and COVID-19;
- Aiding scientists with understanding how it affects the relatives of people who have these rare health conditions;
- Contributing to scientists’ efforts to understand how the pandemic and COVID-19 affects people of different races, classes, genders, and other social groups; and, finally
- Since you are contributing to data that can help lessen the harm of the pandemic for many communities, you are helping society conquer COVID!
Take the Survey
Who do I contact if I have any questions about the survey?
If you want to learn more about the survey or have any other questions, contact the researchers at:
If you want to learn more about the project:
If you want to learn more about the researchers:
To learn more about Robert Hufnagel, the USA Science and Engineering Festival’s article about him.