Aims

Utilizing innovative platforms like the HDYO STRIVE, we aim to develop and provide training, resources, and best practices. Our goal is to recruit young adult members with expertise in Research, Clinical Practice, Science, and Technology, while collaborating with Pharma and CROs in clinical trial design. By integrating evidence-based Trauma and ACE assessment frameworks, we strive to better understand the unique challenges faced by those raised in HD-affected families and improve care outcomes.

  • Better designed trials
    • Clinical trials designed with a better understanding of barriers to participation faced by the client group targeted and include more accurate data points that reflect lived experiences to help track improvements and modification on a social and emotional spectrum.
  • Increase in participation in observational and clinical trials
    • Higher % of young adults between the age of 18 and 39 will actively participate in observational and clinical trials that are open and available to them.
  • Increased understanding of wide psychological impact of HD
    • Through understanding the whole life cycle of the impact of HD rather than just the symptoms of HD we will enable development of resiliency and wellbeing therapies that can be implemented global to enable people to live well longer.
  • Baseline data on YA’s globally
    • HYDO – Survey series analysing some key topics in HD including educational and emotional stigmas about participating in research, mapping HD and life milestones to better understand their journeys, understanding how young people are seeking support and resources, etc.
    • Enroll-HD 2.0 – Higher participation in Enroll-HD 2.0 to understand the earlier baselines of HD progression for research.
    • At-Risk Registry – Currently in proposal format between CHDI and HDYO to understand where young people are located and provide local resources.
  • Roll out of early intervention therapies/practices to improve longer term psychological health outcomes for people impacted by HD
    • Completion of a literature review of current evidence-based models in HD and other adult-onset genetic conditions.

Projects

Previous projects

  • Genetic Testing Checklist
  • Training for Engaging Young People

Ongoing projects

  • Currently Recruiting and Developing Key Projects
  • HDYO STRIVE

Contact Information

Lead Facilitator(s)
Catherine Martin,
Scottish Huntington Association

Jenna Heilman,
Huntington’s Disease Youth Organization

 

Associated EHDN Language Area Coordinator
Naomi Ueda, Ulm, Germany

 
 
 

last update 3 December 2025