Research is a main aspect of our mission because it can improve future outcomes in many ways. Keep reading to learn about some of the reasons research is so important, and some opportunities that you can get involved in!
Research is one of the main ways that health care and medicine are improved. Here are some of the outcomes research can have:
- Gives doctors insight on which medical treatments work or don’t
- Help scientists improve these medical treatments
- Aids doctors with better diagnosing medical problems
- Illuminates when a treatment can be used for multiple conditions
- Assists scientists and doctors with discovering new ways to treat and care for patients
- Helps doctors and scientists find new understandings on how different environmental, social, mental, and physical factors affect one’s health
- Can influence public and governmental views on health overall, and therefore can help push for policies that help people with their medical challenges
Research can also lead to social developments, which can include:
- Raises awareness of medical conditions
- Provides data to validate one’s personal experience
- Offers a chance to connect with individuals and organizations that may offer patient support
- Allows individuals who have similar experiences to connect
- Presents the opportunity for individuals to make a difference
- Gives hope for a better future
Ways YOU Can Support Research
There are some research opportunities for individuals who have Turner Syndrome, and even those around them, to participate in. Be sure to participate now because they are coming to a close very soon!
If you participate in this study from National Institutes of Health, you will help scientists and doctors better understand how COVID-19 affects people with and without rare health conditions like Turner Syndrome.
The goals of this study are:
- 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.
Any individual with Turner Syndrome and those living in the same household can participate. You can participate in this study by answering questions on this online survey. This should take around 30 minutes.
If you participate, you are eligible to win a gift card and can make a positive impact!
This research opportunity from Nisha Patel at the Nationwide Children’s Hospital is meant to help scientists and doctors better understand the factors that help girls and women with Turner Syndrome transition from pediatric to adult medical care.
Patel hopes that with this research, that:
- The transition process can be improved by recognizing transition readiness factors that can be addressed in medical visits to best prepare TS patients for transition;
- Their research can help the TS community’s medical outcomes during and after the transition period; and
- The TS-specific Transition Readiness Assessment Questionnaire (TS-TRAQ ) can be validated, and therefore increase its use among healthcare providers.
You can only participate in this research opportunity by taking an online survey if you are:
- A girl with TS who is 12-25 years old;
- Can write and read English and/or Spanish,;
- Can complete the survey by yourself
If you fit these requirements, you can answer the survey questions by clicking here. When you participate, you are eligible to win a $100 gift card and able to make a positive impact on the TS community! Overall, there are many reasons why participating in research is important. If you are interested and eligible for at least one of these two research opportunities, don’t wait!
Sources used to write this article:
NHS (UK’s Healthcare System) Care Alliance
Hospital for Special Surgery
The National Academies’ The Value, Importance, and Oversight of Health Research
Kennesaw State University’s Graduate and Professional Education School
The Ohio State University’s College of Social Work
University of North Carolina’s School of Medicine