Help Us Learn More

 

Researchers, clinicians and other HD healthcare professionals frequently use anonymous surveys to solicit input from HD patients, families and caregivers about topics such as genetic testing, symptoms and clinical trial participation. The results of these surveys are used to help guide future HD care and research strategies. Here you will find information on surveys being performed by the HD research community that would benefit from your feedback.

HDSA works with researchers and students to review survey materials and Institutional Review Board (IRB) approvals and we only provide links to approved surveys. If you have a question about our vetting process, or you are a researcher with a survey to share, please contact Leora Fox at LFox@hdsa.org. If you have a question about any of the surveys listed here, please contact the study coordinators directly.

Current Surveys

Decisions about Genetic Testing for HD

You are invited to participate in a research study conducted by researchers at the University of Pennsylvania and Isaac Elysee, Master’s student in the University of Pennsylvania Genetic Counseling Program.

The goal of this study is to compare how individuals at risk for HD and their close companions and loved ones think about predictive genetic testing for HD and weigh the decision. This study may help genetic counselors and other clinicians better attend to the needs of HD patients and families in the future.

This study is open to anyone who is at least 18 years old and fits at least one of the following criteria:

  • You have personally considered having genetic testing for HD OR
  • You are currently considering having genetic testing for HD OR
  • You have a close relationship with someone who has considered or is currently considering genetic testing for HD.

The study consists of a short online survey and an optional, short audio-only interview over Zoom. Those who complete the Zoom interview will be eligible to win a $25 Amazon e-gift card.

To take the survey or for more information about the study, please click on this link: https://redcap.med.upenn.edu/surveys/?s=W4AD8RTNXK. You may also copy and paste the link to your URL.

Thank you for contributing to Huntington’s Disease research.

 

Attitudes towards Huntington’s genetic testing – A research study

A team of researchers at the London Business School have created a study aimed at understanding people’s attitudes toward the difficult and complex decision of whether to test for Huntington’s disease. The purpose of this study is to understand people’s attitudes toward testing for HD and the psychological consequences of testing. The findings of this study could potentially help complement consulting procedure for people who have or are at risk of developing Huntington’s disease or have already developed Huntington’s disease. 

The research study is organized by Professor Simona Botti and PhD candidates Nazli Gurdamar Okutur and Selin Goksel at London Business School. The study consists of filling in a short online survey that takes approximately 10 minutes. 

 The researchers are looking for: 

  • People who have Huntington’s disease
  • People who have tested positive but are not yet showing symptoms
  • People who are at risk but haven’t tested 
  • People who have someone they care about who is affected by HD 

If you are 18 years of age or older and are interested in participating, please click on this link: http://lbs.eu.qualtrics.com/jfe/form/SV_9zqupfDREDm2D1H 

Huntington’s Disease (HD) Family Communication Research Study

Do you or a loved one have Huntington’s Disease?

Researchers at Johns Hopkins University are conducting an anonymous, confidential online survey of people who have Huntington’s disease (HD) in their family. This study was designed to improve our understanding of how individuals and families communicate about HD risk and the results of genetic (DNA) testing for HD, and how this information influences the choices and lives of people who are at risk for HD and their families. The findings will be used to help inform counseling and communication about such results to patients, family members, and the larger community.

Click here to view the study flyer and learn more.  

You may qualify for the survey if you are age 14 or older and:
• Have a family history of HD including yourself and/or other members of your family OR
• Are or have been in a romantic relationship with an individual with HD and/or a family history of HD OR
• Have a child or children who is/are at risk for HD or has HD

For more information, please contact:
• Principal Investigator Dr. Debra Mathews, Johns Hopkins Berman Institute of Bioethics; (410) 614-5581; dmathews@jhu.edu or Dr. Jason Brandt, Johns Hopkins School of Medicine; (410) 955-2619; jbrandt@jhmi.edu
• You can also visit our Facebook page: www.facebook.com/HopkinsHD25

To participate in the survey, please use the following link:
https://jhmi.co1.qualtrics.com/jfe/form/SV_erZX5eMhwFwntw9?survey=hdsa

This research study was approved by the Johns Hopkins Medicine IRB, protocol # IRB00203489