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HD Care Improvement Project

The Griffin Foundation established the Huntington’s Disease Care Improvement Project (HDCIP) with the Huntington Study Group (HSG) early in 2017 to help understand and improve the care experience for Huntington disease (HD) patients and families. The founder of the Griffin Foundation, Jack Griffin, is also a caretaker for his wife who has HD. Finding the needed medical care and outreach support proved to be very difficult for both of them. This frustrating experience focused the Foundation on helping to improve the care and outreach needed by HD patients, families, and caregivers, and compelled the Foundation to launch HDCIP.

The first step was to gather data on the care experience from as many people as possible in North America and around the world. The Foundation and HSG partnered with the Huntington’s Disease Society of America (HDSA), HDBuzz, HDYO, Help4HD, WeHaveAFace.org, HD Drug Works, HD Reach, and HSG’s Family Focus Group to develop a survey with help from PricewaterhouseCoopers Advisory Services LLC (PwC). With the help of all of those organizations, the survey spread and over 800 individuals impacted by HD responded in just a few weeks.

The HDCIP team presented two abstracts as posters at HSG 2017 (HSG’s annual educational and research conference). They were published in Neurotherapeutics (see below).

Current Challenges and Future Opportunities: The HD Care Improvement Project

Abstract Lay Summary

This project looks at how to improve clinical care, services, and research for Huntington’s disease (HD). Detailed interviews were done with a number of key players, including: care providers and social workers, basic and clinical researchers, leadership of HD organizations, leadership of non-HD organizations (e.g., biopharma). Current challenges include lack of cooperation between various HD organizations.  Strategies for future collaboration are described.


Background: Numerous HD advocacy and research groups exist in the U.S., but there has been minimal strategic collaboration between them to date. This project investigated challenges faced by key community stakeholders that utilize one or multiple HD groups, and strategized next steps regarding solutions.

Objectives: To assess the relationship between various HD advocacy and research organizations, and to strategize future opportunities for the HD community.

Methods: In conjunction with the Huntington Study Group (HSG), PriceWaterhouseCoopers (PwC) created a structured guide to facilitate stakeholder interviews with a focus on patient-centered outcomes, multi-disciplinary care coordination, and optimizing the HD care experience. PwC conducted 20 detailed interviews with a broad range of stakeholders, including care providers and social workers, basic and clinical researchers, leadership of key HD organizations, and leadership of non-HD organizations (e.g., biopharma).

Results: A number of objectives were defined for collaboration within the HD community:

  • Sharing information and data about recent drug approvals and a robust pipeline of HD drug development.
  • Enhancing significant reach and credibility of HD advocacy organizations within the HD community and providing a strong potential foundation for new strategic partnerships.
  • Addressing untapped potential for convening and catalyzing HD community stakeholders, which limits progress in both clinical care and research.

Conclusions: There is a need for cohesive action by HD organizations. Recommendations:

  • Patient Engagement and Health Promotion Platform: Develop an online community for HD patients and caregivers to express patient voice, share information, and catalyze partnerships.
  • Translational Research Consortium: Develop a patient-centered research collaborative enabling patients, researchers, and clinicians to share data and expertise to enhance precision medicine in partnership with payers, funders, and industry.
  • Integrated Community Care Pilot: Pilot multi-disciplinary care approaches with funding partners that can advance best practices for care with improved outcomes, efficiencies, and cost savings.

Karen Anderson1, Jack Griffin2, Stevan Ramirez3, Joni Steinman4, Al Kinel4, Shari Kinel3

1Georgetown University
2Griffin Foundation
3Huntington Study Group
4Strategic Interests

Improving Care for People with Huntington’s Disease (HD) and Their Families: The HD Care Improvement Project

Abstract Lay Summary

This abstract outlines our recent efforts to identify gaps in clinical care provided to people with HD and their families. A survey was developed with help from a Huntington Study Group HD focus group and the consulting firm PriceWaterhouseCoopers. Results showed that many people with HD do not receive care from HD specialists, but those who do found specialty care to be very helpful. A need for more HD information and HD education in the medical community was identified. Online resources may help to fill some of these gaps in knowledge and care.


Background: There is little known about the quality of HD care in the United States.  Improved care can reduce disease burden for patients and their family members.

Objectives: To measure satisfaction with HD care in the United States, and to identify gaps in HD care.

Methods: Surveys were developed in collaboration with PriceWaterhouseCoopers and Huntington Study Group (HSG) family focus groups, and disseminated via patient advocacy/research participant social media during six weeks in spring of 2017.

Results: Total valid responses numbered 856, including 626 caregiver respondents and 230 patient responses. Respondents received care from Huntington’s Disease Society of America Centers of Excellence; HSG; and other HD specialty centers, primary care providers, movement disorder clinics, and other settings. Only 30% of respondents reported receiving HD specialty care. Patients and caregivers reported searching online (81% of respondents in the last 12 months) for information about HD, researching clinical trials (61% in last 12 months), looking up at-home care-giving tips (45% in last 12 months), and using HD social media channels  (62% in last 12 months). Patients reported the highest quality of care associated with HD specialists, speech pathologists, and occupational therapists, respectively. Caregivers found HD specialists, neurologists, psychiatrists/psychologists, and genetic counselors provided the highest quality care, respectively. Informal care needs were generally not being met. Patients and caregivers emphasized a need for support in financial planning and accessing care. They also expressed a need for more HD education in the medical community.

Conclusions: There is need for more support for HD patients and families. People desire more credible, accessible information. Improving online resources can help fill information gaps. Increased HD specialty training is associated with higher satisfaction with care. Improving resources available to patients and families should be a goal for HD organizations, along with measurement of patient outcomes.

Karen Anderson1, Jack Griffin2, Stevan Ramirez3, Joni Steinman4, Al Kinel4, Shari Kinel3

1Georgetown University, Washington, DC, USA
2Griffin Foundation, Potomac, MD, USA
3Huntington Study Group, Rochester, NY, USA
4Strategic Interests, LLC, Rochester, NY, USA

Want more?

If you’re interested in additional data, please contact the HSG, at info@hsglimited.org or (800) 487-7671.

Improving care and access to care are integral to the mission of HSG, and HSG and the Griffin Foundation are poised to pursue the next steps in seeking treatments that make a difference, together, with the HD community.