The FTD Disorders Registry is an online database to collect information from those affected by all types of frontotemporal degeneration (FTD): behavioral variant FTD (bvFTD), any one of the primary progressive aphasias (PPA), progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), or FTD with motor neuron disease (also called FTD-ALS).
The FTD Disorders Registry (FTDDR) is designed to bring together the frontotemporal degeneration community, this means persons diagnosed, their family members, caregivers, and friends as well as clinicians, scientists, and industry. Our goal is to work together to bring treatments and cures to this spectrum of disorders.
The FTDDR is both a Contact Registry and a Research Registry. As a Contact Registry persons affected by FTD, their caregivers, family members, and friends can join and receive emails about FTD including important research updates and study opportunities. Contact Registry enrollment is open to the US and international community.
As a Research Registry, persons diagnosed, their caregivers, family members, and friends can provide their unique perspective to help us learn more about FTD. Research Registry enrollment requires an individual to be at least 18 years of age and a resident of the US or Canada (19 years in those states or provinces where the age of majority is 19; Alberta, Saskatchewan, Newfoundland and Labrador currently excluded).
Company Details
- Employees
- 6
- Founded
- -
- Address
- King Of Prussia, Us
- Phone
- +1 888-840-9980
- di****@****try.org
- Industry
- Research Services
- NAICS
-
Scientific Research and Development ServicesResearch and Development in the Physical, Engineering, and Life SciencesResearch and Development in the Physical, Engineering, and Life Sciences (except Nanotechnology and Biotechnology)
- Website
- ftdregistry.org
- Keywords
- Frontotemporal degeneration (FTD), behavioral variant FTD (bvFTD), primary progressive aphasia (PPA), progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), FTD with motor neuron disease (also called FTD-ALS), rare dementia diseases, neurological disorders, FTD patient registry (for diagnosed persons, family members, caregivers & friends), online data collection portal, de-identified data (GUID protects privacy), International Contact Registry, North American Research Registry, registrant surveys, patient-centric research, clinical study recruitment, collaborative partnerships, community engagement.
- HQ
- King of Prussia
- Competitors
- Childhood Arthritis and Rheumatology Research Alliance (CARRA), The Association for Frontotemporal Degeneration (AFTD), Alzheimer's Association®, GeneDx, Rare Dementia Support, Alector, National Institute on Aging (NIA), Passage Bio, The Bluefield Project to Cure Frontotemporal Dementia, AviadoBio.
Ftd Disorders Registry Llc Questions
Ftd Disorders Registry Llc's helpline number is +1 888-840-9980
Ftd Disorders Registry Llc's website is ftdregistry.org
Ftd Disorders Registry Llc's LinkedIn profile is https://www.linkedin.com/company/ftd-disorders-registry
Ftd Disorders Registry Llc has
6 employees.
View email and phone details for 6
employees at Ftd Disorders Registry Llc.
Ftd Disorders Registry Llc's industry is
Research Services
Ftd Disorders Registry Llc's top competitors are
Childhood Arthritis And Rheumatology Research Alliance (Carra),
The Association For Frontotemporal Degeneration (Aftd),
Alzheimer's Association®,
Genedx,
Rare Dementia Support,
Alector,
National Institute On Aging (Nia),
Passage Bio,
The Bluefield Project To Cure Frontotemporal Dementia,
Aviadobio.
Ftd Disorders Registry Llc's support email address is director@ftdregistry.org
Ftd Disorders Registry Llc's categories are Research Services
Ftd Disorders Registry Llc's founding year is 2015
