Enroll-HD

What Enroll-HD does

Enroll-HD is a clinical research platform and observational study operated by CHDI Foundation, Inc., a New York-incorporated nonprofit foundation headquartered at 350 Seventh Avenue, Suite 200. Established in 2012, Enroll-HD is described as the world's largest observational study for Huntington's disease families and serves as a resource for the entire HD community, including affected families, clinicians, researchers, advocates, clinical study sponsors, and study sites. The platform's stated mission is to accelerate progress toward effective HD treatments by connecting these stakeholder groups under a shared governance structure of independent committees, with the community-led go-to-market motion recruiting participants globally and channeling data and biosample access back to researchers.\n\nThe platform aggregates high-quality longitudinal clinical datasets and biosamples from HD study participants and provides controlled access to qualified researchers at recognized research organizations. Core product surface includes periodic clinical dataset releases (most recent HDClarity-PDS4 launched in 2024), a controlled biosample repository (including cerebrospinal fluid via HDClarity), the Global Site Investigator Database (GSID) for sponsor-to-site matching, a dedicated Clinical Training Portal (hdtraining.enroll-hd.org) for site coordinator certification, the HDinHD research portal for pre-clinical data and computational models, and specialized tools including the Atlas of HD Phenotype, the Periodic Dataset Explorer, and the HD-ISS Calculator. The platform operates across multiple clinical sites in multiple nations and is available in five languages (English, Spanish, Italian, German, French), with no public or partner-facing API and no mobile applications.\n\nEnroll-HD's business model is non-commercial and aligned with its nonprofit sponsor. Clinical datasets are provided free of charge to researchers to accelerate therapeutic research, and biosample requests operate on a strict cost-recovery basis (biosample, shipping, and handling fees as pass-throughs of project-specific costs, explicitly not sold for profit). Distribution is conducted through direct researcher access requiring institutional authorization and signed Data Use Agreements, supplemented by the Clinical Training Portal for site staff and the GSID for investigator matching. The platform is funded by CHDI Foundation, with no external investors, parent entities, subsidiaries, funding rounds, acquisitions, or patent portfolio identified in the source material; no headcount, revenue, or operating expenditure is publicly disclosed.

Name

Enroll-HD

Legal name

CHDI Foundation, Inc.

Website

https://enroll-hd.org

Company type

Private

Operating status

Operating

Short description

Enroll-HD is a nonprofit clinical research platform and the world's largest observational study for Huntington's disease families, operated by CHDI Foundation. It provides free clinical datasets, cost-recovery biosamples, and domain-specific research tools to HD researchers, clinicians, sponsors, and study sites globally.

Ownership category

akta.pro rank

Product category

Clinical Research Platform

NAICS

Scientific Research and Development Services (5417), Other Individual and Family Services (624190), Educational Support Services (61171)

SIC

Services-Health Services (8000), Services-Prepackaged Software (7372), Services-Computer Processing & Data Preparation (7374)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

akta.pro secondary industries

Site & Investigator Platforms (Site Payments, Feasibility, Activation) (HLACAOAJ), Site Data Management Support (EDC/Source/SDV Readiness) (HLAGACAL), DTx/SaMD Evidence, Outcomes & Real-World Data (RWE) Platforms (HLACANAM)

Keywords

• Clinical research platform
• Observational study
• Clinical datasets
• Biosample repository
• Huntington's disease research

Headquarters

HQ city

New York

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2B

Offering type

Services

Cost components

Personnel, Operations, Technology or R&D, Marketing or Sales, Infrastructure

Revenue model

1. Clinical Dataset Access: Clinical datasets are made available free of charge to researchers at recognized research organizations to accelerate HD therapeutic research and development.
2. Biosample Access: Biosample requests incur costs including biosample fees, shipping fees, and handling fees. Biosample fees partially offset collection and storage costs and give researchers a sense of the actual cost of their experiments. Participant biosamples are not sold for profit.

Pricing tiers

Go-to-market motion1 record

Distribution channels2 records

Marketing channels5 records

Core offering

Enroll-HD is a clinical research platform and the world's largest observational study for Huntington's disease families. It provides high-quality clinical datasets, biosamples, and research tools to qualified researchers at recognized research organizations to accelerate HD therapeutic research and development, while serving as a resource for the entire HD community including families, clinicians, researchers, and advocates.

Product overview

Enroll-HD is a clinical research platform and the world's largest observational study for Huntington's disease families. The platform provides a comprehensive ecosystem of tools and resources including the core Enroll-HD Platform for data collection and study coordination, Clinical Datasets and Biosamples accessible to qualified researchers, the HDClarity periodic dataset initiative, the Global Site Investigator Database (GSID) for connecting with study sites worldwide, an Enroll-HD Clinical Training Portal for site staff certification, the HDinHD research portal for pre-clinical scientific data, and research tools including the Atlas of HD Phenotype, Periodic Dataset Explorer, and HD-ISS Calculator. The platform is managed by CHDI Foundation and available in multiple languages (English, Spanish, Italian, German, French).

Differentiator

Problem solved

Functional benefit

Products and services

• Enroll-HD Platform A clinical research platform and the world's largest observational study for Huntington's disease families, serving as a resource for the entire HD community including families, clinicians, researchers, advocates, and anyone with a connection to or interest in HD.
• Clinical Datasets High-quality clinical datasets from multiple HD studies made available to researchers through the Enroll-HD platform, including periodic datasets like HDClarity-PDS4.
• Biosamples Biological samples from HD study participants available to qualified researchers at recognized research organizations through a controlled access process.
• HDClarity A periodic dataset initiative within Enroll-HD that provides cerebrospinal fluid and other biosamples data from Huntington's disease patients for research purposes.
• Global Site Investigator Database (GSID) A global database of site investigators that supports the Enroll-HD clinical research network by enabling identification and connection with study sites worldwide.
• Enroll-HD Clinical Training Portal A training portal providing operational resources and clinical training for study site staff, including certification and continuing education for site coordinators.
• HDinHD (Huntington's Disease in High Definition) An open online portal for the HD research community that presents a synthesized view of HD-related, largely pre-clinical, scientific data, sharing primary scientific data, analyses, and computational models with browsing and data interrogation tools.
• Atlas of HD Phenotype A tool providing comprehensive phenotypic data visualization and analysis for Huntington's disease research.
• Enroll-HD Periodic Dataset Explorer An interactive data exploration tool allowing researchers to browse and query periodic dataset releases.
• HD-ISS Calculator A calculator tool for computing the Huntington's Disease Integrated Staging System (HD-ISS) score from clinical data.

Segments4 records

Ideal customer profiles3 records

Technology focussed Yes

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature5 records

Partnerships

Two partnerships are on record, tiered minor and core.

• HDBuzzminorOthersEnroll-HD integrates HDBuzz RSS feeds on its website to provide HD science news and updates to its community. HDBuzz provides Huntington's disease science news content.
• EHDN (European Huntington's Disease Network)coreStrategic or Co-development PartnerEHDN partners with Enroll-HD for events including the EHDN Clinical Research Congress (e.g., 2026 event in Krakow, Poland). The organizations collaborate on HD research conferences and presentations.

Scale indicators3 records

Recent moves5 records

Expansion highlights6 records

Emerging players

• ALS Therapy Development Institute (ALS TDI): ALS TDI is a nonprofit research organization that runs its own lab and data programs for ALS, operating in a disease-focused research-data model adjacent to Enroll-HD's, though with a more translational emphasis.
• TREAT-NMD: TREAT-NMD operates global patient registries and supports translational research for neuromuscular diseases, applying a similar registry + standards model in a different therapeutic area.

Others

• Foundation for the National Institutes of Health (FNIH): FNIH is a nonprofit that organizes large public-private biomedical research partnerships and manages multi-stakeholder data initiatives, comparable to Enroll-HD as a non-commercial research platform hub.

Direct peers

• Parkinson's Progression Markers Initiative (PPMI): PPMI runs a large-scale longitudinal observational study for Parkinson's disease, recruiting participants, collecting biosamples, and providing data access to researchers—the closest analog to Enroll-HD's model applied to a different neurodegenerative disease.
• European Huntington's Disease Network (EHDN): EHDN runs the European observational HD study and clinical research congresses that Enroll-HD aligns with, making it the closest functional peer within the same disease community.
• Alzheimer's Disease Neuroimaging Initiative (ADNI): ADNI is a foundational multi-site observational study providing clinical, imaging, and biosample data to Alzheimer's researchers worldwide, structurally mirroring Enroll-HD's role for Huntington's disease.
• Answer ALS: Answer ALS is a large-scale multi-site observational study for ALS that aggregates clinical, genomic, and biosample data to fuel therapeutic research, applying the same playbook Enroll-HD uses for HD.
• Fox Insight (Michael J. Fox Foundation): Fox Insight is a large-scale online longitudinal observational study of Parkinson's disease participants that collects self-reported and genetic data, structurally the digital/online analog of Enroll-HD for a different disease.
• TRACK-HD: TRACK-HD was a precursor multi-site observational study in Huntington's disease that informed and overlapped with Enroll-HD's design, and they address overlapping research communities.

Broad incumbents

• C-Path (Critical Path Institute): C-Path is a nonprofit consortium that builds clinical-trial data standards, biomarkers, and regulatory-grade tools across multiple diseases, including some HD work, making it a broader incumbent in therapeutic development data infrastructure.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights6 records

Customer concentration

Revenue estimate

Valuation estimate

Number of profiles

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about Enroll-HD