Huntington Disease Care Improvement Project (HDCIP)

 The global leader in facilitating treatment research for Huntington disease – the Huntington Study Group (HSG) – needed help launching an ambitious cross-sector initiative to improve quality of care, access to care, and patient and family outreach.

To best facilitate the launch, we focused on three key efforts: 1) Conducting a national survey and interviews with patients, care providers, clinical researchers and health system leaders, 2) Analyzing leading clinical and population care models, and 3) Delivering a global market analysis to identify key pipelines, partners and funding trends.

As a result, the Huntington disease patient journey became clear, helping HSG and their partners understand how to effectively improve the patient and family experience. With this information in hand, HSG is positioned for strategic partnerships with the research community, patient advocates, as well as Federal, commercial and non-profit organizations.


The Huntington Study Group (HSG) is a global leader in facilitating high quality clinical research for advancing treatment for Huntington Disease (HD). HSG needed help conceptualizing and launching the Huntington Disease Care Improvement Project (HDCIP), an ambitious cross-sector initiative for improving quality of care, access to care, and outreach to HD patients and families.  


  1.  Guidehouse, formerly known as PwC Public Sector LLP, developed, conducted, and analyzed a national survey of patients and caregivers (N=856) for improving quality of care and outreach to patients and families with HD. The project required a strong understanding of the patient experience and included targeted interviews with care providers, clinical researchers and health systems leaders. Impact: Our team helped HSG understand the patient journey including barriers and enablers to care for patients, families, providers, and organizations in the HD ecosystem, facilitating strategic partnerships with the research, non-profit, and patient advocacy community

  2. Guidehouse analyzed leading clinical and population care models (multi-level interventions, devices, and therapeutics) to inform new approaches to harnessing clinical/real-world evidence (RWE) for patient-centered care for HD. Impact: Our team informed HSG’s go-to-market strategy for engaging with leading commercial, non-profit, and federal funding organizations for advancing and scaling world-class HD patient treatment and care.

  3. Guidehouse conducted a global market analysis to identify key ecosystem partners, industry funding trends, biopharma pipelines, and reimbursement strategies for a sustainability roadmap and patient-centered strategic plan for HSG. Impact: Our team’s roadmap and strategic plan guided HSG’s engagement with federal, commercial, and non-profit organizations for strategic partnership and funding.

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