named programs · 4 · from sources
What they call their work
HSG Clinical Research Organization (HSGCR)
Wholly owned subsidiary that provides clinical trial operations and research services to accelerate the development of therapies for Huntington’s disease.
UHDRS®
Unified Huntington’s Disease Rating Scale, a standardized tool developed by HSG to assess disease symptoms and progression, recognized by the FDA as a primary endpoint in clinical trials.
myHDstory® Platform
Direct-to-participant online platform enabling remote participation in observational HD studies, increasing accessibility and diversity in research enrollment.
vUHDRS®
Virtual administration of the UHDRS to assess reliability of remote clinical evaluations in Huntington’s disease research.
activities · 8 groups
What they do
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Biomedical Research and Innovation 2 activities
- Implementing innovative clinical trial methodologies and technologiesConducts clinical trials using advanced methodologies including adaptive study designs, wearable sensors, virtual trial visits, at-home research nurse visits, and direct-to-patient drug delivery to improve trial accessibility and data quality.
- Operating a global participant recruitment and enrollment network for HD trialsRecruits and enrolls participants for clinical trials using access to over 800 HD experts, 130+ credentialed trial-ready sites, and a diverse pool of over 20,000 HD participants worldwide, enabling high-quality, scalable clinical research.
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Scientific Conference & Symposium Management 1 activity
- Building and sustaining a global collaborative network for HD researchMaintains the world’s largest collaborative network of HD experts, established in 1993, with a global membership dedicated to accelerating treatments. Fosters collaboration among investigators, coordinators, and professionals through shared research, education, and operational frameworks.
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Neurological Disorder Research & Rehabilitation 1 activity
- Conducting clinical trials and research studies for Huntington's diseaseHas conducted over 40 clinical trials and studies in Huntington’s disease, including pivotal trials that led to the first three FDA-approved treatments for HD symptoms (tetrabenazine, deutetrabenazine, valbenazine). Trials include innovative designs such as adaptive protocols, wearable sensors, virtual visits, and direct-to-patient delivery, with execution through its subsidiary HSG Clinical Research, Inc.
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Medical Staff Credentialing & Advocacy 1 activity
- Operating a credentialing program for HD research sites and personnelDevelops and implements credentialing policies for investigators, coordinators, and research sites participating in HSG trials. Requires sites to have HD clinical experience and prior research involvement, mandates credentialed personnel per site, and requires triennial updates to maintain standing.
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Medical Professional Education & Training 1 activity
- Providing education and training for HD rehabilitation professionalsDevelops educational resources including CME4HD, a multi-module course to train therapists in evidence-based rehabilitation for HD, and organizes professional development courses such as the rehabilitation professionals course at the annual HSG meeting.
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Disease-Specific Clinical & Patient Education 1 activity
- Providing rigorous care initiatives for HD-affected familiesDelivers care programs aimed at improving quality of life and health outcomes for individuals and families affected by Huntington’s disease, including development of clinical guidance tools such as one-page pocket guides for neurologists on therapy referrals.
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Rare Genetic Disease Research and Advocacy 1 activity
- Supporting large-scale observational research in HDProvides clinical research expertise and infrastructure to Enroll-HD, the world’s largest observational study on Huntington’s disease, contributing to longitudinal data collection and research advancement.
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Uncategorized 3 activities
- Developing and maintaining standardized clinical assessment tools for HDDeveloped the Unified Huntington’s Disease Rating Scale (UHDRS®), recognized by the FDA as a primary endpoint in clinical trials, and its virtual version (vUHDRS®) for remote clinical assessments. These tools are used globally in HD research and patient care.
- Developing digital and observational research platforms for HDCreated myHDstory®, an online platform enabling direct-to-participant observational research, and launched vUHDRS®, the first virtual observational study validating remote administration of the UHDRS®.
- Leading quality management and operational systems for HD clinical trialsLeads the development and implementation of the HSG’s Quality Management System and provides project management leadership across multiple HD clinical trials and organizational committees to ensure operational excellence.
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financials · form 990 · fy2024
revenue
Total revenue$5.04M
Contributions & grants$347K7%
Program service revenue$4.42M88%
Investment income$220K4%
Other revenue$56K
expenses
Total expenses$4.92M
Program expenses60%
Admin / overhead40%
Fundraising0%
Salaries & benefits$1.60M
Grants paid out$0
Largest expense lineCompensation
balance sheet
Total assets$8.06M
Cash$48K
Investments$6.33M
Liabilities$1.23M
Net assets$6.83M
Liquid reserves15.6 mo
3 years on record · 2020–2024 · YoY revenue -20.7%
leadership · form 990 part vii · fy2024
Who runs it
paid leadership · 8
| Name | Title | Hours/wk | Compensation |
|---|---|---|---|
| SHARI KINEL JD | CEO/SECRETARY (UNTIL 7/3/24) | 40 | $282K |
| ANNE VAN DUSEN | COO | 40 | $280K |
| MICHAEL LENTINE | CFO | 40 | $236K |
| DANIEL CLAASSEN | CEO (BEGIN 9/1/24) | 40 | $162K |
| MELISSA AUSTIN | DIR, CLINICAL OPERATIONS | 40 | $160K |
| ELIZABETH DE BLIECK | SR. DIR, PROJECT MANAGEMENT | 40 | $154K |
| KELLEY MORGAN | SR. PROJECT MANAGER | 40 | $140K |
| ELISE KAYSON-RUBIN | VP OF CLINICAL OPERATIONS | 40 | $137K |
board members · 4
- ARVIND SREEDHARAN — BOARD MEMBER
- JONI STEINMAN — TREASURER (UNTIL NOV. 2024)
- PETER SCHMIDT PHD — CHAIR
- WILLIAM HOH — VICE CHAIR
relationships · 32
Who they work with
- Aaron Lasker Partner — Co-Chair/Chair-Elect of the Scientific Advisory Council
- Amy Brown Partner — Co-Chair/Chair-Elect of the Site Development Advisory Council
- Board of Directors & EMC Network — Governing body overseeing HSG membership benefits and organizational direction
- CHDI Foundation Funder — Funded or co-sponsored multiple HSG studies including COHORT, PREDICT-HD, and QuBE.
- CROs Partner — Partner organizations collaborating to advance therapies for Huntington's disease
- Center for Health + Technology (CHeT) Partner — Vendor partner supporting HSG studies.
- Dr. Chris Ross Partner — Chair of the Scientific Advisory Council
- Dr. Ciaran Considine Partner — Co-Chair/Chair Elect of the Clinical Advisory Council
- Dr. Jamie Adams Partner — Chair of the Clinical Advisory Council
- Dr. Jee Bang Partner — Chair of the Education Advisory Council
- Dr. Veronica Santini Partner — Co-Chair of the Education Advisory Council
- EHDN Partner — Collaborates with the Behavioral Working Group on remote meetings regarding behavioral symptom management in long-term care and longitudinal analyses of problem behaviors.
- Enroll-HD Partner — Hosts and provides UHDRS® certification and training used as part of HSG credentialing requirements.
- Enroll-HD Partner — Provides clinical research expertise and knowledge to support Enroll-HD, the world’s largest observational study on Huntington’s disease.
- HDSA Partner — Collaborates with the Juvenile Onset HD Working Group to develop and disseminate best practices for juvenile-onset Huntington’s disease.
- HDYO Partner — Collaborates with the Juvenile Onset HD Working Group to ensure management guidelines are accessible and feasible for youth and families affected by Huntington’s disease.
- HSG Clinical Research, Inc. Partner — HSG conducts clinical trials through its wholly owned subsidiary, HSG Clinical Research, Inc.
- HSG Clinical Research, Inc. Partner — Wholly owned subsidiary of HSG that conducts clinical trials as a clinical research organization.
- Help4HD Partner — Partners with the Juvenile Onset HD Working Group to communicate best practices to patients and families affected by Huntington’s disease.
- NIH Government — Funded or co-sponsored multiple HSG studies including PREDICT-HD, PHEND-HD, and CREST-E.
- Neurocrine Biosciences Partner — Partnered on the KINECT-HD trial leading to FDA approval of valbenazine for chorea in HD.
- Prilenia Therapeutics Partner — Partnered on the PROOF-HD DB & OLE trial.
- Robin Kuprewicz Partner — Chair of the Site Development Advisory Council
- Scientific Advisory Council Partner — Provides consultative research advisory services for clinical studies in Huntington’s disease and related therapeutic areas.
- Teva Partner — Partnered on multiple clinical trials including LEGATO-HD and Pride-HD.
- University of Rochester School of Medicine and Dentistry Clinical Trials Coordination Center Partner — Vendor partner supporting HSG studies.
- Vaccinex Partner — Partnered on the SIGNAL trial, the first infusion study in HD.
- Vanderbilt University Medical Center Partner — Hosts the Level 1 Huntington’s Disease Center of Excellence established with HSG leadership.
- Western Psychological Services Partner — Collaborates on use of the Symbol Digit Modalities Test (SDMT), which is owned by Western Psychological Services and incorporated into the UHDRS®.
- foundations Partner — Partner organizations supporting the advancement of Huntington's disease therapies
+ 2 more
strategies · 5
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.
- Collaborative Research Network Modelmethodology: collaborative_research_networkBy integrating researchers, clinicians, families, advocacy groups, and sponsors into a unified network, HUNTINGTON STUDY GROUP LTD accelerates therapeutic development for Huntington’s disease because shared knowledge, joint initiatives, and coordinated expertise enhance research quality and speed.
- Disease-Specific Clinical Trial Acceleration Modelmethodology: disease-specific_cro_modelBy operating as a specialized, nonprofit clinical research organization exclusively focused on Huntington’s disease, the organization accelerates treatment development because deep disease expertise and mission alignment improve trial design, execution, and scientific rigor.
- Participant-Centered Decentralized Trial Designmethodology: decentralized_clinical_trialsBy using decentralized methods such as virtual visits, remote assessments, and at-home nursing, the organization improves participant recruitment, retention, and compliance because reduced burden and increased accessibility make clinical trial participation feasible for geographically dispersed and mobility-limited patients.
- Revenue Reinvestment for Mission Alignmentmethodology: revenue_reinvestment_modelBy reinvesting net revenue from clinical trial operations back into Huntington’s disease research and care initiatives, the organization sustains long-term innovation and equity in access because financial returns are redirected to advance scientific and patient-centered goals rather than external shareholders.
- Standardization and Credentialing for Research Qualitymethodology: research-site-credentialingBy requiring standardized training (CME4HD) and credentialing of investigators, coordinators, and sites, the organization ensures high-quality, reliable clinical research because uniform practices and rigorous standards reduce variability and enhance data integrity across studies.