myHDstory

19/12/2024

🚨 Important Update 🚨

To better serve you, we are consolidating our communications and will no longer be posting separate updates on this page. For all myHDstory®-related news and announcements, please head to our main Huntington Study Group page for the latest information.

👉 facebook.com/huntingtonsg/

Thank you for your continued support of our mission to accelerate treatments that make a difference for Huntington’s disease.

Accelerating treatments that make a difference for Huntington's disease.

27/09/2024

The online study, LEAD-HD, aims to further deepen our understanding of HD over a 24-month longitudinal research period. By joining , you become an integral part of accelerating progress in HD research.

Through the power of collective knowledge, we can enhance the understanding of HD, improve strategies for diagnosis, treatment, and care.

Get started at myHDstory.org or download the mobile app.

26/09/2024

Help the research community understand the reasons why you would or would not participate in a drug trial or observational study.

Participate in the 2.0 Survey at myHDstory.org or download the app.

25/09/2024

ONLINE STUDY: LEAD-HD
STATUS: Enrolling adult participants

By sharing your experience, you play a critical role in helping researchers better understand the natural history of !

Register today at myHDstory.org or download the mobile app.

24/09/2024

PARTICIPATE IN THE PROJECT AWARE 2.0 SURVEY!
Help make a difference at myHDstory.org or download the mobile app.

Your answers will help the research community better understand your feelings & beliefs concerning how HD studies are conducted.

23/09/2024

In every individual's journey with HD lies a story of courage, resilience, and truth. We believe these stories hold the key to better understanding .

Share your story in the online longitudinal study, LEAD-HD, which enrolls participants who have been diagnosed with HD. Every sign-up is a step closer to better treatment and care.

Visit myHDstory.org for more information.

20/09/2024

HSG is seeking participants living with or prodromal HD to partake in a 24-month longitudinal research study. Share your experience and influence future research.

Sign up now at myHDstory.org or download the mobile app.

19/09/2024

Sign up today to participate in the Project AWARE 2.0 Survey and help improve awareness, willingness, and the ability to participate in research.

Visit myHDstory.org or download the mobile app.

18/09/2024

Break the silence on ! Share your experiences and voice your priorities with the online myHDstory® study, LEAD-HD. Join the platform committed to learning from your journey to advance HD research.

Register now: myHDstory.org or download the mobile app.

17/09/2024

The 2.0 Survey on myHDstory invites adult participants living in the United States, who either have or are at risk, to help design future HD drug trials and observational studies.

Visit myHDstory.org or download the mobile app.

16/09/2024

Are you someone diagnosed with ? The path to understanding HD better begins with your experience.

myHDstory® invites you to take a stand for all those impacted by HD by participating in the LEAD-HD research study.

Visit myHDstory.org or download the mobile app.
Learn more: https://huntingtonstudygroup.org/myhdstory/

15/09/2024

You can help the research community design future clinical studies and trials by participating in the 2.0 Survey!

Sign up today at myHDstory.org or download the mobile app.

14/09/2024

Enroll now in the online study, LEAD-HD!
The myHDstory® platform invites individuals living with to contribute to pivotal research studies such as the upcoming study, . Register now for the 24-month longitudinal study, share your story, and accelerate advancements in understanding and treating HD.

Get started at myHDstory.org or download the mobile app.

13/09/2024

Lead research!
myHDstory® is now enrolling study participants for LEAD-HD.

This voluntary study will help researchers understand how affects diagnosed participants. Share your story and help advance treatments for HD.

Accelerate research at myHDstory.org or download the mobile app.

12/09/2024

Share your knowledge and concerns about clinical research by taking the Project AWARE 2.0 Survey. You hold the answers to helping the HD Research Community accelerate treatments that make a difference for !

Get started at myHDstory.org or download the mobile app.

11/09/2024

myHDstory® is enrolling participants for the online study, LEAD-HD!

Register now: myHDstory.org

Over a 24-month period, the study investigates what you feel and experience living with . The accrued data will help create a patient-reported natural history of HD, meaningful outcomes for clinical trials, priority access to participate in future research, and a shared de-identified database for researchers to analyze and publish findings.

10/09/2024

What factors would be important in your decision to participate in a drug trial?
The Survey will provide researchers insight into the motivations & concerns of families regarding participating in clinical research!

Visit myHDstory.org.

09/09/2024

The myHDstory® 24-month longitudinal online study, LEAD-HD is enrolling participants. This study will explore a deeper understanding of the daily challenges faced by individuals with .

By actively involving yourself in this endeavor, you become a catalyst for change, helping to shape research priorities and influence the development of innovative approaches.

Register at myHDstory.org or download the mobile app.