top of page

Unlocking the Mysteries of Huntington's Disease: How Your Input Can Change Lives

In the realm of medical research, understanding the nuances of genetic diseases is crucial for developing effective treatments and support systems. Huntington's Disease (HD), a genetic disorder that affects the brain, has long been the subject of scientific study. Today, we have the opportunity to contribute to groundbreaking research that seeks to understand not just the physical, but the psychological ramifications of predictive genetic testing for HD.

A team of dedicated researchers from Vrije University Amsterdam, including Assistant Professor Selin, alongside Prof. Simona Botti from London Business School and Dr. Nazli Gurdamar-Okutur at Koc University, have embarked on a pivotal project. Their work aims to dissect the psychological impacts—both positive and negative—of undergoing predictive tests for Huntington's Disease. Such tests can forecast the likelihood of developing HD, offering a glimpse into a potentially altered future.

Why Your Participation Matters

The focus of the current study is a short survey, meticulously designed to take no more than five minutes of your time. This survey aims to gather insights from individuals who are at risk of HD or are beginning to exhibit early symptoms. The goal? To understand how knowledge of one's genetic fate impacts psychological well-being before and after symptoms manifest.

Your participation is more than just filling out a questionnaire; it's a vital contribution to a larger conversation about how medical knowledge affects mental health. The data gathered will directly influence how support is tailored for individuals facing the realities of HD, ensuring that psychological care is as nuanced as the medical interventions.

How to Participate

Deciding whether or not to go through genetic testing for Huntington's disease is

a difficult decision. That’s why a team of researchers (Professor Simona Botti at

the London Business School, Dr. Selin Goksel at Vrije Universiteit Amsterdam, and

Dr. Nazli Gurdamar-Okutur at Koc University) has created a research study which

aims to understand the psychological consequences of testing for Huntington’s


The study consists of filling in a short online survey that takes approximately 5

minutes. The researchers are looking for individuals who have already started

developing symptoms of the Huntington’s Disease or are at risk of developing the

disease. The survey includes several questions assessing participants’ current

psychological well-being. The researchers will donate $2 for each participant who

fills out the survey completely to the Huntington’s Disease Society of America.

If you are interested, please click on the following link to take the survey! Your

effort is very much appreciated.

Spread the Word

The challenge of reaching individuals affected by HD is significant. Many who could provide invaluable insights into the psychological impact of predictive testing are not always easy to connect with. This is where you come in—by participating and encouraging others within your community to do the same, you amplify the potential for this research to foster real change.

In Conclusion

We thank you for considering this opportunity to contribute to vital research on Huntington's Disease. Each survey completed is a step forward in the quest to understand and mitigate the psychological effects of HD. For further information or to discuss any questions you might have, please do not hesitate to get in touch with the research team.

Together, we can unlock the mysteries of HD and pave the way for a future where the psychological well-being of those at risk is as prioritized as their physical health. Let's join hands in this critical endeavor—your voice matters, and your experiences can lead to profound impacts on lives around the globe.

And be sure to share this article so that many more people participate.


Bình luận

bottom of page