This issue of HD Insights explores the theme of a family-centered care approach for Huntington’s disease. The writers address topics such as integrating counseling into clinical care, stress, and coping, and how to confront difficult decisions. By including key stakeholders such as children, families, and our invaluable rehabilitation professionals in these conversations, we can leverage the importance of shared decision-making, effective communication, and respect to better serve the HD community together.
Our focus at Huntington Study Group® goes beyond individual patients, as we empower our members to develop innovative projects that inspire entire communities. Through cooperation and partnership, we seek activities that align with our vision of improving the lives of everyone impacted by Huntington’s disease through research, education, and collaboration. It is often through the ingenuity and passion of our HSG members that remarkable ideas are designed and put into action.
If you are brimming with ideas and a passion for HD, we invite you to explore the initiatives proposal process on our website. We also hope you will continue reading this issue to uncover your own potential role in this exploration of critical topics. As a community deeply committed to family-based care and partnerships, we know we can achieve remarkable things… together.
The Power of Collaboration
Huntington Study Group®’s Clinical Research Organization (CRO), HSG Clinical Research Inc., is exceptional. This is a result not only of our experience and accomplishments, but also the unique relationships we cultivate with our research sites and sponsors, which are built on a foundation of mutual trust, respect, and shared decision-making. Through our innovative hub-and-spoke centralized project management operating model, we facilitate open communication and foster a collaborative environment because we understand that to truly make an impact for the Huntington’s disease (HD) community, it takes a village.
For 30 years, we have dedicated ourselves to developing and supporting education and care initiatives, building a passionate, committed network, and finding innovative ways to conduct research. We have conducted over 40 trials and studies, including three pivotal clinical trials that led to the only FDA-approved medications for Huntington’s disease-associated chorea. We launched a direct-to-participant online research platform where the pilot study reached a more ethnically, racially, and geographically diverse population than any other HD study. And we developed virtual measures to assist with remote and hybrid trials to reduce participant burden and increase data availability.
We have a lot to be proud of at HSGCR, but we haven’t done it alone. Everything we’ve accomplished in support of the HD community and fulfillment of our mission has been possible because of our amazing partners, our collaborators, our supporters, our village, our family. The power of these partnerships knows no bounds and we are confident they will continue to propel HSG for years to come.
SOME OF THE RECENT INITIATIVES OUR MEMBERS HAVE DEVELOPED INCLUDE:
This groundbreaking program, launching at this year’s 2023 annual meeting, is committed to involving the next generation of HD researchers, fostering a spirit of partnership that transcends generations.
HSG Social Work Working Group
By convening HD social work professionals, this group seeks to create a platform for collaboration, contribute to the knowledge base in both HD and social work, establish best clinical practices, identify areas where HD care requires improvement, and develop promising solutions.
Multidisciplinary Rehabilitation Professionals for HD Course at HSG 2023
We are excited to offer this complimentary course, uniting rehabilitation professionals to enhance their expertise and provide even better care to the HD community.