What duchenneconnect does

DuchenneConnect (operating as The Duchenne Registry) is a nonprofit patient-reported registry founded in 2007 and operated by Parent Project Muscular Dystrophy (PPMD) that serves individuals with Duchenne and Becker muscular dystrophy, female carriers, and others with pathogenic Duchenne gene variants. Participants self-register through a mobile app (iOS and Android, launched 2019 via THREAD Research) and a web portal, then complete longitudinal surveys covering muscle strength, cardiac health, medications, and treatments. As of the 15-year report, the registry held approximately 5,500 registrants across more than 125 countries, with data used in 13+ peer-reviewed publications and connected to 175+ clinical trials and research studies.

The registry's core technology layer consists of three components: the THREAD Research-hosted mobile/web participant platform, the Prometheus Research (an IQVIA company)-managed Duchenne Outcomes Research Interchange data warehouse, and bidirectional EHR integration with PPMD's Certified Duchenne Care Centers (CDCCs). This architecture combines patient-reported data, clinical EHR data, and data from industry partners with approved therapies into a unified longitudinal natural history dataset. Data is also contributed to TREAT-NMD's international pooled registry and the Duchenne Regulatory Science Consortium (D-RSC) at the Critical Path Institute.

The business model is grant- and donation-funded rather than commercial. PPMD has been the sole institutional funder since 2011, covering all operating costs. Participation is free for patients and families, with no pricing tiers. De-identified data is shared with researchers and pharmaceutical companies on a research-collaboration basis rather than through paid licensing, although the registry reserves the right to charge for services in the future. The customer base is therefore split between patient/caregiver participants (no cost) and industry/academic data consumers (collaborative access), with the Duchenne Drug Development Roundtable (DDDR) serving as the industry advisory channel.

Name

duchenneconnect

Legal name

Parent Project Muscular Dystrophy

Website

https://duchenneregistry.org

Company type

Private

Founded year

2007

Operating status

Operating

Short description

The Duchenne Registry is a free, patient-reported mobile and web registry for individuals with Duchenne and Becker muscular dystrophy and female carriers, operated by Parent Project Muscular Dystrophy since 2007 and combining 15 years of longitudinal self-reported data with EHR data from Certified Duchenne Care Centers.

Ownership category

akta.pro rank

Product category

Patient Registry Platform

akta.pro primary industry

Patient Registries & Chronic Disease Registry Analytics (HLACAHAH)

akta.pro secondary industry

Disease Registries (Cancer, Immunization, Rare Disease, etc.) (HLAJAJAE)

Keywords

• Patient registry platform
• Rare disease research
• Clinical trial recruitment
• Natural history data
• Genetic testing program

Headquarters

HQ city

Washington

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Software

Cost components

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

Revenue model

1. Research Grants and Institutional Funding: The Duchenne Registry has been funded entirely by Parent Project Muscular Dystrophy (PPMD) since 2011. PPMD funds the registry through institutional budgets and grants. Data is shared with researchers and pharmaceutical companies (de-identified) to advance Duchenne research. Participation is free for patients. Registry services are provided at no cost to registrants.
2. Data Licensing to Industry Partners: De-identified registry data is shared with researchers, pharmaceutical companies, and the Duchenne Regulatory Science Consortium (D-RSC) at the Critical Path Institute to support drug development and clinical trials. This is done on a research collaboration basis, not a commercial transaction.

Pricing tiers

Go-to-market motion1 record

Distribution channels4 records

Marketing channels6 records

Core offering

The Duchenne Registry is a patient-reported data registry for individuals with Duchenne or Becker muscular dystrophy and female carriers, accessible via mobile app (iOS and Android) and web portal. Participants self-register, complete medical surveys on muscle strength, cardiac health, medications, and treatments, and contribute longitudinal health data that is shared (de-identified) with researchers, drug developers, and the TREAT-NMD international network to accelerate research and clinical trial recruitment.

Product overview

The Duchenne Registry is a patient-report registry platform for Duchenne and Becker muscular dystrophy and female carriers, accessible via a mobile app (iOS and Android) and web portal. Participants self-register and contribute longitudinal health data on topics including muscle strength, cardiac health, medications, and treatments. The Registry integrates with the Duchenne Outcomes Research Interchange, which combines patient-reported data with EHR data from participating Certified Duchenne Care Centers to create a comprehensive longitudinal natural history database. Supporting offerings include the Decode Duchenne free genetic testing program, and published research reports such as the 15 Year Registry Report.

Differentiator

Problem solved

Functional benefit

Brands

• Duchenne Outcomes Research Interchange: A patient- and clinician-reported data warehouse combining data from The Duchenne Registry with Electronic Health Record data and industry partner data.

Products and services

• The Duchenne Registry (Mobile App and Web Portal) An online patient-reported registry for individuals with Duchenne or Becker muscular dystrophy and female carriers, accessible via mobile app (iOS and Android) and web portal. Participants self-register and contribute longitudinal health data on muscle strength, cardiac health, medications, and treatments to advance research and connect with clinical trials.
• Duchenne Outcomes Research Interchange A patient- and clinician-reported data warehouse that combines patient-reported data from The Duchenne Registry with Electronic Health Record data and data from industry partners with approved therapies, managed by Prometheus Research (an IQVIA company). Provides a comprehensive longitudinal natural history database for Duchenne and Becker muscular dystrophy.
• PPMD's Electronic Health Record (EHR) Study

Quantifiable outcome

• 5,500+ registrations since launch in 2007
• +8 more outcomes

Named customers4 records

Segments4 records

Ideal customer profiles3 records

Technology focussed Yes

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature3 records

Partnerships

Nine partnerships are on record, tiered core and minor.

• THREAD ResearchcoreTechnology or Integration · 1 January 2019THREAD Research specializes in remote/virtual patient research. In 2019, The Duchenne Registry transitioned to a mobile app-based platform with THREAD Research. THREAD hosts the registry app and complies with important research and privacy regulations for protecting patient data. THREAD replaced participant names and personal information with codes for de-identification.
• Prometheus Research (IQVIA)coreTechnology or Integration · 1 January 2018Prometheus Research (an IQVIA company) manages the Duchenne Outcomes Research Interchange, a secure data warehouse combining patient-reported registry data, EHR data, and data from industry partners. Prometheus are leaders in health data security and informatics. All data is stored securely in accordance with strict industry standards and patient privacy laws. The Interchange was launched in 2018.
• TREAT-NMD Neuromuscular NetworkcoreStrategic or Co-development Partner · 1 January 2007The Duchenne Registry has been a member of the TREAT-NMD Neuromuscular Network since its inception in 2007. Several key data fields from The Duchenne Registry are shared with the TREAT-NMD International Neuromuscular Registry, which pools data from thousands of patients worldwide and enables more powerful data analysis and discovery. This partnership enhances global knowledge of Duchenne.
• Duchenne Regulatory Science Consortium (D-RSC)coreStrategic or Co-development PartnerThe Duchenne Registry contributes all de-identified data to D-RSC of the Critical Path Institute, who pools data from multiple sources to develop a Duchenne disease progression model. This partnership supports regulatory science and drug development for Duchenne therapies.
• PCORnet (Patient-Powered Research Networks)minorStrategic or Co-development PartnerThe Duchenne Registry was selected as a Patient-Powered Research Network (PPRN) in PCORnet for both Phase 1 and 2, from 2014-2019. This partnership connected the registry to a national patient-centered clinical research network.
• Decode Duchenne Program PartnersminorStrategic or Co-development PartnerPPMD and The Duchenne Registry partnered with pharmaceutical companies to launch and administer the Decode Duchenne free genetic testing program. Participants must be living in the United States or Canada. This program identifies individuals with dystrophinopathy and refers them to the registry.
• Certified Duchenne Care Centers (CDCCs)coreStrategic or Co-development PartnerPPMD's Certified Duchenne Care Centers (CDCCs) are active partners with The Duchenne Registry. Their expert clinicians provide advice and guidance, and they encourage their patients and families to register. Some CDCCs have established EHR integration with the Duchenne Outcomes Research Interchange for the EHR Study.
• Duchenne Drug Development Roundtable (DDDR)minorStrategic or Co-development PartnerPPMD's Duchenne Drug Development Roundtable (DDDR) of pharmaceutical partners provides valuable advice and guidance from the industry perspective. DDDR includes pharmaceutical companies developing Duchenne therapies.
• RTI International Center for Newborn Screening, Ethics, and Disability StudiesminorImplementation/ SI/ Consulting PartnerRTI International performed statistical analyses for the 10-year registry report, cleaning data and running analyses that were reviewed by the PPMD Registry team.

Scale indicators10 records

Recent moves6 records

Expansion highlights5 records

Market position

Strengths5 records

Weaknesses3 records

Competitive moat5 records

Key risks6 records

Key highlights6 records

Customer concentration

Revenue estimate

Valuation estimate

Number of profiles

Profiles6 records

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 duchenneconnect