This article follows up our story from the Autumn 2021 issue about an upcoming pilot study (HD Insights, Volume 26, “In Brief: Pilot Study – Making HD Voices Heard”).
On March 28, 2022, the Huntington Study Group launched the Making HD Voices Heard pilot study on the myHDstory™ platform for select participants in the United States. After this initial soft-launch period, the pilot will be further expanded with a full U.S. public launch.
WHAT IS MYHDSTORY™?
myHDstory™ is an online research project sponsored by the Huntington Study Group (HSG). It will help researchers to understand how Huntington disease (HD) affects patients, care partners, and those at genetic risk for HD. myHDstory™ was created as a research study to enable People Affected by Huntington’s Disease (PAHD) to report their symptoms and voice their priorities. The myHDstory™ platform was developed in collaboration with technology companies Grey Matter Technologies (GMT) and NeuroTargeting (NT). This platform will help create:
- A profile of patient-reported experiences of what it is like living with HD
- Outcomes for clinical trials based on symptoms that are important to PAHD
- A resource to enable PAHD to easily participate in new research
- 4A de-identified, shared database for researchers to help them understand what PAHD feel and experience
- Publication of the results of the research findings that will be shared with participants, the broader HD community, and researchers around the world
BENEFITS OF AN ONLINE PLATFORM
The myHDstory™ platform helps address some critical needs in HD research. As we have seen over the past two years due to COVID-19 restrictions, evolving research to enable virtual access for participants helps research continue to progress with limited or no disruptions. This would have been nearly impossible in past decades due to limitations in access to technology or the physical limitations of the technology itself, potentially stopping research progress in its tracks.
Further to this point, research platforms like myHDstory™ can help reach and engage HD populations that are currently underserved. In a 2017 publication1, it was estimated that approximately 70% of all people with or at risk from HD do not see or have access to an HD care specialist. Geographic specialty care is extremely challenging. The myHDstory™ platform seeks to bridge that gap and provide the ability for research participation to even more people in the HD community.
DESIGNED FOR AN EASY AND POSITIVE USER EXPERIENCE
Modeled on the highly successful Fox Insight platform used by the Michael J. Fox Foundation for Parkinson’s Disease participants, myHDstory™ blends an intuitive interface and straightforward navigation with a secure back-end system architecture that meets stringent regulatory requirements.
While benchmarks such as Fox Insight are tremendously valuable, every affliction has a unique community functioning around it. So, it was important to make sure the voice of the HD community specifically was included in the design of myHDstory™. A family advisory board was created to further inform and guide the development team’s approach, and serve as the very first beta testers of the platform.
WHAT’S NEXT FOR MYHDSTORY™?
Following the conclusion of the pilot study, which is a web-based pilot to start, there are numerous plans in the works for the future of myHDstory™. The first priority is to assess feedback from pilot study participants, which will help inform future platform enhancements to improve upon the user experience. A mobile app is in concurrent development and testing, which will provide additional methods of access to the platform.
After that, new studies will be considered, developed and prioritized for release to serve a variety of purposes – studies with a specific and short-term focus, studies that are ongoing and longitudinal in nature, studies for the additional HD populations (presymptomatic, at-risk, gene negative), and studies for HD caregivers. All of these will have the benefit of allowing participants to engage in important HD research from the comfort and privacy of home, requiring minimal time commitment compared to
in-person visits.
The Huntington Study Group will also be looking to gradually expand the reach for myHDstory™ beyond just participants in the United States, including the potential to provide localized content in multiple languages. Making myHDstory™ a platform for the global HD community is a long-term goal, one that will require detailed planning and coordination with international agencies, due to regulatory requirements that can vary significantly by region.
WHERE TO FIND MYHDSTORY™?
Details about the myHDstory™ platform are available on the Huntington Study Group’s website (https://huntingtonstudygroup.org/myhdstory).
Additional updates can be found by following the HSG social media accounts on Facebook (@HuntingtonSG), Twitter (@HuntingtonSG), Instagram, and LinkedIn. There are also dedicated myHDstory accounts on Facebook, Twitter, and LinkedIn that you can follow to keep up with the latest updates.
1Anderson, KE, Griffin, J, Kinel, A, Shaikh, AR, Olofintuyi, T, Ramirez, S et al. Quality of Care for Huntington’s Disease in the United States: Findings from a National Survey of Patients and Caregivers. J Huntingtons Dis. 2019;8 (4):509-519.
