Summary
- Online Surveys: Participate in HD Research from home!
- Understanding the Daily lives of people living or caring for someone with HD
- Attitudes towards Huntington’s Disease Genetic Testing – A research study
- Paid research to improve digital tablet design and accessibility features
- Upcoming Research Webinar: Neurocrine Biosciences, Inc. Discusses INGREZZA
Online Surveys: Participate in HD Research from home!
Online surveys are a great way to make your voice heard and contribute to HD research from wherever you have access to the internet. Whether you are a person with HD, caring for a loved one with HD, at –risk for HD, or someone who is part of an HD family, there are researchers who value your experiences and want your feedback. You can view all available opportunities at https://hdsa.org/hd-research/online-surveys/. Keep reading for highlights of some of the newest additions to the list!
- Understanding the Daily lives of people living or caring for someone with HD
LaGrippe Research is conducting a study to learn more about the daily lives and struggles of people affected by Huntington’s Disease (HD). People who have been diagnosed with HD and caregivers to a loved one who has been diagnosed with HD are invited to participate. All participants must live in the USA and be 18 years or older.
This research will be in the form of a 75-minute, online interview for compensation of $125. If you are interested, please fill out the preliminary survey here: https://www.surveymonkey.com/r/HPXXPSS. A LaGrippe Research team member will follow up with you regarding your eligibility for the project. If you have any questions, please contact Alex at 847-533-4052 or email alex@lagripperesearch.com.
- Attitudes towards Huntington’s Disease Genetic Testing – A research study
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 disease.
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 Huntington’s Disease. The survey includes several questions assessing participants’ current psychological well-being. The researchers will donate $2 to HDSA for each participant who fills out the survey completely.
If you are interested, please click on the following link to take the survey! Your effort is very much appreciated.
https://vueconomics.eu.qualtrics.com/jfe/form/SV_diiBo6e7uOfcMu2
- Paid research to improve digital tablet design and accessibility features
Open Inclusion, a disability-inclusive research organization operating in the UK and USA, are recruiting 24 people with Huntington’s disease to take part in a one or two-part research study. In the first stage, (lasts 1 week) you’ll create some videos of a few minutes each telling us about your life and your use of digital smartphones or tablets. In the second stage, (lasts 2 weeks) you’ll be given a new Apple or Google tablet and asked to create some more short videos showing us how you use the tablet in your daily life.
OpenInclusion will pay $300 for the first phase and $200 plus a new digital tablet (which you can keep) for the second stage. For people who need carer support to do this, OpenInclusion will pay an additional incentive to recognize their help. Support and alternatives are offered in how you can provide insights. If you find it difficult to take or upload videos yourself – OpenInclusion will work with you to find a solution. The only requirements to enter this study are that you are over 18, live in the USA or Canada, use smartphones or tablets, are open to digital solutions from major technology brands and have Huntington’s disease. If you’d like to know more, please contact Cathy Rundle at cathy@openinclusion.com.
Upcoming Research Webinar: Neurocrine Biosciences, Inc. Discusses INGREZZA
Join HDSA for a research webinar next week on December 8th in which Neurocrine Biosciences, Inc. will discuss their new medication recently approved by the U.S. Food and Drug Administration (FDA) for the treatment of chorea associated with HD in adults. Neurocrine has collected questions in advance and will incorporate answers into a Q&A at the end of the webinar. Register to join here.
