What FTD Disorders Registry does

FTD Disorders Registry is a 501(c)(3) nonprofit patient registry and research platform focused on frontotemporal degeneration (FTD) disorders, including behavioral variant FTD, primary progressive aphasia (PPA), progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), and FTD-ALS. Established in March 2015 as a joint initiative between The Association for Frontotemporal Degeneration (AFTD) and The Bluefield Project to Cure Frontotemporal Dementia, it launched public enrollment on March 28, 2017 and reached participants across all 50 U.S. states and more than 30 countries within five years. The platform serves diagnosed individuals, caregivers, biological family members, healthcare professionals, and academic/clinical researchers, providing a personalized dashboard, monthly Quick Questions surveys, a Find-a-Study clinical trial directory, and individualized clinical-trial matching based on participant profiles and geography.

The Registry is operated on the IQVIA IHP platform (ftdregistry.ihp.iqvia.com), using a Global Unique Identifier (GUID) system to de-identify participant data, segregated linked tables separating identifying information from health data, 128-bit SSL encryption, and HIPAA, GDPR, and PIPEDA-compliant data handling under an IRB-approved research protocol (WIRB study #1162895). It is governed by a Scientific Advisory Board that reviews researcher data-use requests. The 2024 platform relaunch introduced expanded capabilities and a refreshed research protocol. Supporting partners include the NIH-funded ALL ALS Research Consortium, the multinational GENFI consortium, and academic centers such as Penn, UCSF, Mayo, Northwestern, Boston University, and Mass General Hospital; pharma sponsors include Passage Bio, AviadoBio, and CervoMed.

The Registry is free for all participants and does not charge researchers or sponsors for recruitment services; operations are funded by donations and grants from founding nonprofits AFTD and Bluefield Project and other partners, including the Bluefield-sponsored Progranulin Navigator genetic testing program. Distribution is entirely digital via the website and participant portal, with no paid advertising — growth is driven by community advocacy, healthcare-provider referrals, organic social channels, email newsletters, and earned media. The organization operates with 1-10 employees from a King of Prussia, PA headquarters.

Name

FTD Disorders Registry

Legal name

FTD Disorders Registry LLC

Website

https://ftdregistry.org

Company type

Private

Founded year

2015

Operating status

Operating

Headcount range

1–10 employees

Short description

The FTD Disorders Registry is a nonprofit 501(c)(3) patient registry and research platform that connects persons diagnosed with FTD disorders, caregivers, family members, and researchers through a free, HIPAA-compliant online portal. It enables longitudinal data collection, clinical trial matching, and recruitment support for the FTD therapeutic pipeline.

Ownership category

akta.pro rank

Product category

Patient Registry Services

NAICS

Services for the Elderly and Persons with Disabilities (62412), Individual and Family Services (6241), Other Individual and Family Services (624190)

SIC

Services-Health Services (8000), Services-Social Services (8300)

akta.pro primary industry

Patient Registries & Chronic Disease Registry Analytics (HLACAHAH)

akta.pro secondary industry

Clinical Data Repositories (CDR) & Longitudinal Patient Records (HLACAIAH)

Keywords

• Patient registry platform
• Clinical trial recruitment
• Rare disease research
• Longitudinal health surveys
• De-identified health data

Headquarters

HQ city

King Of Prussia

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations and Grants (Implicit): As a 501(c)(3) nonprofit organization, the FTD Disorders Registry is funded through donations and grants. The organization was established by two nonprofit entities — The Association for Frontotemporal Degeneration (AFTD) and The Bluefield Project to Cure Frontotemporal Dementia — and its activities are supported by these and other partner organizations. No direct revenue is charged to participants; the registry is free for all registrants.

Pricing tiers

Go-to-market motion1 record

Distribution channels3 records

Marketing channels7 records

Core offering

The FTD Disorders Registry is a free, online nonprofit patient registry and research platform that collects contact information and longitudinal survey data from persons diagnosed with frontotemporal degeneration (FTD), biological family members, caregivers, and friends. It connects this research-ready community with FTD clinical trials, observational studies, and approved researchers via a personalized dashboard, while sharing de-identified data with scientists working toward treatments and cures.

Product overview

The FTD Disorders Registry is a non-profit online patient registry and research platform designed to accelerate FTD research by connecting persons diagnosed, caregivers, family members, clinicians, and researchers. The platform consists of two core offerings: the Contact Registry, which provides enrollment and a personalized dashboard connecting participants with FTD resources and research opportunities, and the Research Registry Study, which allows eligible participants to contribute through informed consent and surveys. Supporting features include the Find-a-Study tool for browsing clinical trials, Quick Questions for monthly community input, and clinical trial matching based on participant profiles. The 2024 platform relaunch introduced new capabilities and a transformed online research protocol. The Registry is operated by FTD Disorders Registry LLC in partnership with AFTD and the Bluefield Project.

Differentiator

Problem solved

Functional benefit

Products and services

• FTD Disorders Registry (Contact Registry) An online database that collects contact information from those affected by all types of frontotemporal degeneration (FTD), including behavioral variant FTD (bvFTD), primary progressive aphasia (PPA), progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), and FTD with motor neuron disease (FTD-ALS). Available globally to anyone 18+ (19+ in certain states/provinces) with a connection to FTD disorders — persons diagnosed, family members, caregivers, friends, physicians, and other healthcare professionals. Provides a personalized dashboard connecting members with FTD resources, study listings, and external research opportunities tailored to their interests.
• Registry Research Study

Quantifiable outcome

• Reached 100 registrants in less than 24 hours of launch on March 28, 2017, exceeding the two-week goal.
• +3 more outcomes

Named customers10 records

Segments5 records

Ideal customer profiles3 records

Technology focussed Yes

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration6 records

Feature4 records

Partnerships

Ten partnerships are on record, tiered core, major, minor and supporting.

• Bluefield Project — Progranulin Navigator (Sponsored Genetic Testing Program)coreStrategic or Co-development Partner · 1 July 2025The Bluefield Project sponsors the Progranulin Navigator genetic testing program through which individuals with FTD diagnosis or family members of GRN variant carriers can receive sponsored genetic testing covering 18 FTD-associated genes. Testing is administered by Psomagen (Variantyx for NY residents), with genetic counseling provided by Everly Health. The Bluefield Project receives de-identified patient information and may share it with research partners.
• The Association for Frontotemporal Degeneration (AFTD)coreStrategic or Co-development Partner · 1 March 2015AFTD is the founding co-creator of the FTD Disorders Registry. Founded in 2012, AFTD is the leading U.S. advocacy organization for FTD disorders. AFTD co-founded the Registry in March 2015 as a shared vision, provided nonprofit 501(c)(3) sponsorship, and continues as a core organizational partner. AFTD helps promote the Registry to its community and co-brands on the Registry's homepage.
• The Bluefield Project to Cure Frontotemporal DementiacoreStrategic or Co-development Partner · 1 March 2015The Bluefield Project to Cure Frontotemporal Dementia is the second founding co-creator of the FTD Disorders Registry, sharing the vision for a patient registry with AFTD in March 2015. Bluefield continues as a core organizational partner and co-brands on the Registry's homepage.
• IQVIA (Platform Technology Partner)coreTechnology or IntegrationThe FTD Disorders Registry operates its participant portal on IQVIA's IHP platform (ftdregistry.ihp.iqvia.com). IQVIA provides the underlying survey software, data collection infrastructure, and platform technology that powers the Registry's research study operations, including participant enrollment, survey delivery, and data management.
• ALL ALS Research Consortium (NIH-funded)majorStrategic or Co-development PartnerThe ALL ALS Research Consortium is an NIH-funded network spanning 35 research sites across the U.S. working on ALS and FTD. The Registry supports recruitment for the ALL ALS and PREVENT ALL ALS studies, and the ALL ALS consortium directs interested participants to the Registry. This is a collaborative relationship advancing shared research goals.
• Genetic Frontotemporal Dementia Initiative (GENFI)majorStrategic or Co-development PartnerGENFI is a multinational research consortium across Europe and Canada studying genetic FTD (GRN, MAPT, C9orf72). The Registry supports recruitment for GENFI and its youth extension GENFI-NeuroDev, and GENFI directs participants to the Registry. GENFI sites span the UK, Netherlands, Belgium, France, Spain, Portugal, Italy, Germany, Switzerland, Sweden, Denmark, Finland, Croatia, Serbia, Turkey, and Canada.
• CurePSPminorOthersCurePSP is an advocacy organization for PSP and CBS/CBD. The Registry links to CurePSP's clinical trial listings for families affected by PSP and corticobasal syndrome. CurePSP also provides brain donation program resources referenced on the Registry's Brain Donation page.
• Michael J. Fox Foundation for Parkinson's ResearchminorOthersThe Michael J. Fox Foundation's FoxTrialFinder tool is referenced on the Registry's Find a Study page as a resource to help match patients with CBD and PSP to relevant trials. This is a referral/resource sharing relationship.
• Probably Genetic (Program Administrator for Bluefield's Progranulin Navigator)supportingTechnology or IntegrationProbably Genetic administers the Bluefield Project's Progranulin Navigator sponsored genetic testing program on behalf of the Registry. The platform screens participants for eligibility and manages the testing referral process, with results delivered through Everly Health's genetic counseling services.
• Linguistic Data Consortium at the University of PennsylvaniasupportingStrategic or Co-development PartnerThe Registry supports the Penn/UCLA Linguistic Data Consortium study developing automated methods to track neurocognitive health through speech interactions. This study creates an open dataset of speech samples from individuals across all ages and cognitive statuses, with the Registry helping to recruit participants.

Scale indicators4 records

Recent moves9 records

Expansion highlights6 records

Direct peers

• ALS Therapy Development Institute: Operates the ALS Research Collaborative, an online patient registry collecting longitudinal data from people with ALS. Comparable nonprofit patient-registry model serving a closely related neurodegenerative disease population.
• Alzheimer's Prevention Registry (Banner Alzheimer's Institute): Largest US-based dementia prevention registry, recruiting research-ready participants for Alzheimer's and related dementias. Closely comparable model—online enrollment, longitudinal surveys, study matching—but broader/AD-focused rather than FTD-focused.
• Genetic Frontotemporal Dementia Initiative (GENFI): Multinational research consortium studying genetic FTD across Europe and Canada; operates its own genetic FTD registry with longitudinal phenotyping. Highly comparable as the leading international counterpart to the FTD Disorders Registry, and an active referral partner.
• Parkinson's Progression Markers Initiative (PPMI): Large longitudinal Parkinson's disease observational study and registry with biomarker-rich cohort. Same archetype—a rare neurodegenerative-disease patient registry with biobanking, longitudinal data, and pharma/academic sponsorship—though for PD rather than FTD.
• ALL ALS Research Consortium (NIH-funded): NIH-funded network spanning 35 US research sites running the ALL ALS and PREVENT ALL ALS studies, with overlap into FTD-ALS. Operates a patient registry and recruitment infrastructure directly comparable to the FTD Disorders Registry's model.

Emerging players

• CurePSP: Advocacy organization focused on PSP and CBS/CBD (two FTD subtypes). Operates clinical trial listings and brain donation resources referenced by the Registry. Closely adjacent in mission, overlapping in disease scope.
• The Association for Frontotemporal Degeneration (AFTD): Leading US advocacy organization for FTD disorders and a co-founder of the FTD Disorders Registry. Comparable as an FTD-focused nonprofit organization, but primarily an advocacy/education entity rather than a research registry.

Others

• Fox Trial Finder (Michael J. Fox Foundation): Web-based clinical trial matching tool for Parkinson's and related disorders including PSP/CBD. Complementary trial-matching functionality, referenced by the Registry as a resource. Adjacent enabling service rather than direct competitor.
• ClinicalTrials.gov: NIH-run public registry of clinical trials. Not a patient registry per se, but the default destination for trial discovery and an indirect alternative channel for participant recruitment in FTD.

Broad incumbents

• IQVIA (IHP Platform): Global CRO and healthcare technology provider whose IHP platform powers the FTD Disorders Registry participant portal. Broad incumbent in registry technology and real-world evidence, with strategic relationship to the Registry as platform vendor.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xx.com/EndFTDregistry
• Facebookfacebook.com/EndFTDregistry

Compliance4 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about FTD Disorders Registry