Name

Treat-NMD

Legal name

TREAT-NMD Alliance Ltd

Website

https://treat-nmd.org

Company type

Private

Founded year

2007

Operating status

Operating

Headcount range

11–50 employees

Ownership category

akta.pro rank

Product category

Neuromuscular Disease Research Infrastructure & Services

NAICS

Research and Development in Biotechnology (except Nanobiotechnology) (541714), Research and Development in the Physical, Engineering, and Life Sciences (54171), Scientific Research and Development Services (5417)

SIC

Services-Commercial Physical & Biological Research (8731), Services-Health Services (8000)

akta.pro primary industry

Real-World Data (RWD) Platforms & Clinical Data Curation (HLACAIAJ)

akta.pro secondary industries

Decentralized/Hybrid Trial Enablement (DCT) Platforms (HLACAOAL), Real-World Evidence (RWE) & HEOR for Development (HLAIALAI), Clinical Trial Site Operations & Study Coordination (HLAGACAE), Neurology & Psychiatry (CNS) Pharmaceuticals (HLAIAAAF)

Keywords

• Neuromuscular disease research
• Patient registry services
• Clinical trial advisory
• Post-marketing surveillance
• Rare disease network

Headquarters

HQ city

Newcastle

HQ country

United Kingdom

HQ region

Europe

Offices1 record

Markets served

GTM type

B2B

Offering type

Services

Cost components

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

Revenue model

1. Membership Services: TREAT-NMD Alliance Ltd is a registered charity with a wholly owned business arm called TREAT-NMD Services Ltd. Revenue appears to come from membership fees, educational programs, and industry partnerships.
2. TACT Advisory Services: The Advisory Committee for Therapeutics (TACT) charges applicants a contribution towards meeting costs based on their stage of development and investment raised. Fees are scaled to reflect the level of support required.
3. Post-Marketing Surveillance Services: TREAT-NMD contributes to post-marketing studies as an independent partner to pharmaceutical companies or clinical research organisations, working alongside their registry network.

Pricing tiers

Go-to-market motion1 record

Distribution channels4 records

Marketing channels5 records

Core offering

Treat-NMD operates a global federated network of 65+ neuromuscular disease patient registries across more than 40 countries, supported by its proprietary Global Registries Platform (cloud-based SaaS) and Core Datasets that harmonise patient data collection for DMD, SMA, LGMD, FSHD, DM, and standard NMD. The organisation sells multidisciplinary advisory reviews of therapeutic development programmes (TACT), runs an education and e-learning programme for clinicians, and delivers post-marketing surveillance services to pharmaceutical companies and CROs.

Product overview

TREAT-NMD is a global network organisation focused on accelerating diagnosis, care and treatment for neuromuscular diseases. The organisation operates a platform-plus-services model anchored by the Global Registry Network (federated network of 65 national/regional patient registries from over 40 countries) and the Global Registries Platform (cloud-based SaaS for standardised patient data collection). Supporting services include the Advisory Committee for Therapeutics (TACT) providing expert drug development review, Education Masterclasses and E-Learning Platform for healthcare professional training, Post-Marketing Surveillance Services for regulatory compliance, Core Datasets for data harmonisation, Standards of Care & Family Guides for care guidelines, SOP Library for preclinical research standardisation, and the biennial TREAT-NMD International Conference for community engagement.

Differentiator

Problem solved

Functional benefit

Products and services

• Global Registries Platform (GRP) A cloud-based, user-friendly software-as-a-service platform provided to member registries for collecting standardised patient data on neuromuscular disease patients, supporting both clinician and patient-reported data collection. Each registry maintains ownership of its data with controlled access through approved curators.
• Global Registry Network A federated network of national and regional patient registries that collect data on neuromuscular patients from over 40 countries worldwide, coordinating global data enquiries and supporting clinical trial feasibility, recruitment, and post-authorisation studies.
• Advisory Committee for Therapeutics (TACT) A multidisciplinary expert committee providing confidential review and guidance on therapeutic development programmes for neuromuscular diseases, addressing trial design, drug formulation, regulatory considerations, and go/no-go milestones. TACT charges applicants a contribution towards meeting costs based on their stage of development and investment raised.
• Education Masterclasses and E-Learning Platform Specialist educational masterclasses and digital e-learning resources for healthcare professionals covering diagnosis, management, and therapeutic development of neuromuscular diseases.
• Post-Marketing Surveillance Services Independent partnership services facilitating international post-authorisation safety and efficacy studies for pharmaceutical companies and clinical research organisations to fulfil regulatory requirements.
• Core Datasets Harmonised, disease-specific minimum data requirements for registries covering Duchenne muscular dystrophy, limb girdle muscular dystrophy, spinal muscular atrophy, facioscapulohumeral muscular dystrophy, and myotonic dystrophy.
• Standards of Care & Family Guides International consensus guidelines and family-friendly guides developed with clinicians, researchers and patient organisations defining best practice in neuromuscular care worldwide.
• SOP Library Standardised operating procedures for preclinical research protocols using animal models including mdx mouse, GRMD dog, CMD mouse, and SMA mouse models to improve comparability of studies across laboratories.
• TREAT-NMD International Conference Biennial international conference bringing together patients, clinicians, researchers, and industry representatives to inform, inspire and connect across the neuromuscular disease community. The 9th conference is scheduled for 16-18 May 2027 in Newcastle upon Tyne.

Segments3 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

23 partnerships are on record, tiered core.

• SMA EuropecoreStrategic or Co-development PartnerPatient organisation partner collaborating on patient-facing materials, educational masterclasses, the Global Registry Network and the TREAT-NMD Conference. Neuromuscular patients are at the heart of their mission.
• Parent Project Muscular DystrophycoreStrategic or Co-development PartnerPatient organisation partner collaborating on patient-facing materials, educational masterclasses, the Global Registry Network and the TREAT-NMD Conference.
• Cure DuchennecoreStrategic or Co-development PartnerPatient organisation partner collaborating on patient-facing materials, educational masterclasses, the Global Registry Network and the TREAT-NMD Conference.
• Muscular Dystrophy AssociationcoreStrategic or Co-development PartnerPatient organisation partner collaborating on patient-facing materials, educational masterclasses, the Global Registry Network and the TREAT-NMD Conference.
• Duchenne UKcoreStrategic or Co-development PartnerPatient organisation partner collaborating on patient-facing materials, educational masterclasses, the Global Registry Network and the TREAT-NMD Conference.
• World Duchenne OrganisationcoreStrategic or Co-development PartnerPatient organisation partner collaborating on patient-facing materials, educational masterclasses, the Global Registry Network and the TREAT-NMD Conference.
• The RYR-1 FoundationcoreStrategic or Co-development PartnerPatient organisation partner collaborating on patient-facing materials, educational masterclasses, the Global Registry Network and the TREAT-NMD Conference.
• Daniel Ferguson LGMD FoundationcoreStrategic or Co-development PartnerPatient organisation partner collaborating on patient-facing materials, educational masterclasses, the Global Registry Network and the TREAT-NMD Conference.
• FSHD SocietycoreStrategic or Co-development PartnerPatient organisation partner collaborating on patient-facing materials, educational masterclasses, the Global Registry Network and the TREAT-NMD Conference.
• Parent Project Muscular Dystrophy ItalycoreStrategic or Co-development PartnerPatient organisation partner collaborating on patient-facing materials, educational masterclasses, the Global Registry Network and the TREAT-NMD Conference.
• AstellascoreGTM or Marketing PartnerLife sciences industry partner providing support for education masterclasses and e-learning platform to ensure the best standard of care is given to neuromuscular patients across the globe.
• PfizercoreGTM or Marketing PartnerLife sciences industry partner providing support for education masterclasses and e-learning platform to ensure the best standard of care is given to neuromuscular patients across the globe.
• PTC TherapeuticscoreGTM or Marketing PartnerLife sciences industry partner providing support for education masterclasses and e-learning platform to ensure the best standard of care is given to neuromuscular patients across the globe.
• RochecoreGTM or Marketing PartnerLife sciences industry partner providing support for education masterclasses and e-learning platform to ensure the best standard of care is given to neuromuscular patients across the globe.
• SareptacoreGTM or Marketing PartnerLife sciences industry partner providing support for education masterclasses and e-learning platform to ensure the best standard of care is given to neuromuscular patients across the globe.
• AperitocoreGTM or Marketing PartnerLife sciences industry partner providing support for education masterclasses and e-learning platform to ensure the best standard of care is given to neuromuscular patients across the globe.
• Newcastle UniversitycoreStrategic or Co-development PartnerAcademic partner and host institution. The John Walton Muscular Dystrophy Research Centre, a key partner, is affiliated with Newcastle University.
• LUMC (Leiden University Medical Center)coreStrategic or Co-development PartnerAcademic partner; Prof. Dr. Annemieke Aartsma-Rus is a professor of Translational Genetics at LUMC and serves on the TREAT-NMD Education Committee.
• The John Walton Muscular Dystrophy Research CentrecoreStrategic or Co-development PartnerAcademic partner; Volker Straub is Professor of Neuromuscular Genetics and Deputy Dean at this research centre.
• Ludwig Maximilian University of MunichcoreStrategic or Co-development PartnerAcademic partner providing key opinion leaders who support and contribute to efforts to improve lives of those diagnosed with neuromuscular disease.
• Amsterdam University Medical CenterscoreStrategic or Co-development PartnerAcademic partner providing key opinion leaders who support and contribute to efforts to improve lives of those diagnosed with neuromuscular disease.
• Binghamton UniversitycoreStrategic or Co-development PartnerAcademic partner providing key opinion leaders who support and contribute to efforts to improve lives of those diagnosed with neuromuscular disease.
• AetioncoreImplementation/ SI/ Consulting PartnerClinical research organisation partner working alongside TREAT-NMD's Project Management team to support pharmaceutical companies through post-marketing authorisation studies.

Scale indicators8 records

Recent moves6 records

Expansion highlights6 records

Direct peers

• Muscular Dystrophy Association (MDA): US-based patient advocacy and research organisation for neuromuscular diseases including DMD, SMA, ALS, and FSHD. Directly comparable as a similarly structured (501c3) NMD-focused network that funds research, runs a patient registry (MOVR), and operates an education and clinical care mission.
• Parent Project Muscular Dystrophy (PPMD): US-based nonprofit focused specifically on Duchenne muscular dystrophy, operating its own Duchenne Registry and funding research and care initiatives. Directly comparable as a disease-specific patient organisation partner with overlapping registry and educational functions.
• Cure SMA: Patient organisation focused on spinal muscular atrophy, operating a patient registry and funding drug development and clinical care programmes. Directly comparable as a disease-specific NMD advocacy network with an active registry and industry engagement model.
• EURORDIS – Rare Diseases Europe: European umbrella organisation for rare disease patient organisations, coordinating pan-European rare disease policy, registries, and patient engagement. Comparable as a network-of-networks that convenes stakeholders and influences rare disease research infrastructure policy.
• European Reference Networks (ERNs): EU-funded virtual networks linking healthcare providers across Europe for rare disease diagnosis and treatment, including EURO-NMD specifically for neuromuscular diseases. Comparable as a multi-country rare disease infrastructure with registry, advisory, and care coordination functions.
• Orphanet: European rare disease knowledge base providing inventory of rare diseases, expert centres, and patient registries. Comparable as a publicly funded infrastructure that supports rare disease research, patient identification, and registry curation.
• Cure Duchenne: US-based patient organisation focused exclusively on Duchenne muscular dystrophy, funding research and patient programmes. Documented TREAT-NMD partner and directly comparable as a disease-specific NMD patient advocacy and research-funding organisation.

Broad incumbents

• IQVIA: Global CRO and real-world data provider operating disease-specific registries and feasibility data assets across many therapeutic areas. Comparable as a large incumbent offering overlapping registry, RWD, and clinical trial recruitment services at greater scale but with less disease-specific depth in NMD.
• Medidata (Dassault Systèmes): Clinical trial technology platform providing EDC, eCOA, DCT, and synthetic control arm capabilities. Comparable as a broad incumbent whose DCT and synthetic control offerings compete for the same sponsor budgets as registry-enabled feasibility and recruitment services.

Emerging players

• Aetion: Real-world evidence analytics platform used by regulators and biopharma for outcomes research and post-market studies. A documented TREAT-NMD partner for post-marketing surveillance; comparable as an emerging RWE technology provider serving overlapping pharma customers.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat6 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xx.com/TREAT_NMD
• LinkedInlinkedin.com/company/treat-nmd

Compliance1 record

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Subsidiaries1 record

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 Treat-NMD