The International Niemann-Pick Disease Registry (INPDR) is a non-profit subsidiary company of the International Niemann-Pick Disease Alliance (INPDA) set up solely to maintain the Registry, to hold the Intellectual Property (IP) and to introduce a stable structure that will support the on-going development and sustainability of this much-needed and valuable resource.
The Registry is a collection of secure web-based databases created by a consortium of patient organisations and professionals with support from the Europan Union. It refers to a system for collecting and maintaining, in a structures record, anonymised data on individuals diagnosed with Niemann-Pick Disease (NPD).
The purpose of the Registry is to develop and sustain a unique patient-led database that supports research and therapy development, and improves care and treatment for NPD patient through global collaboration.
The overall aims and objectives of the INPDR are:
- To establish the natural history of NPC and ASMD (their characteristics, management and outcomes).
- To assess standards of diagnosis and care of Niemann-Pick Disease patients.
- To provide an inventory of patients for recruitment to interventional studies and post market surveillance.
- To establish genotype-phenotype correlations.
- To provide support for equal access to biochemical and genetic testing, education of health professionals, and empowerment of patients.
- To provide a regulatory compliant registry to satisfy post-marketing obligation.
- To provide fast and consistent global data-sharing.
Company Details
- Employees
- 10
- Founded
- -
- Address
- Suite 2, Vermont House,united Kingdom
- Industry
- Hospitals And Health Care
- NAICS
-
Health Care and Social AssistanceSocial Assistance
- Website
- inpdr.org
- HQ
- Washington, Tyne and Wear
- Competitors
- APCViseu, Assura, Inc., Angela Wilson Communications, International Niemann-Pick Disease Alliance (INPDA), Astellas Pharma, NATIONAL NIEMANN-PICK DISEASE FOUNDATION, Fabry Australia, ANPB - Associação Niemann-Pick & Batten Brasil, Niemann-Pick UK (NPUK), Australian NPC Disease Foundation Inc.
International Niemann-Pick Disease Registry (Inpdr) Questions
International Niemann-Pick Disease Registry (Inpdr)'s website is inpdr.org
International Niemann-Pick Disease Registry (Inpdr)'s LinkedIn profile is https://uk.linkedin.com/company/inpdr
International Niemann-Pick Disease Registry (Inpdr) has
10 employees.
View email and phone details for 10
employees at International Niemann-Pick Disease Registry (Inpdr).
International Niemann-Pick Disease Registry (Inpdr)'s industry is
Hospitals and Health Care
International Niemann-Pick Disease Registry (Inpdr)'s top competitors are
Apcviseu,
Assura, Inc.,
Angela Wilson Communications,
International Niemann-Pick Disease Alliance (Inpda),
Astellas Pharma,
National Niemann-Pick Disease Foundation,
Fabry Australia,
Anpb - Associação Niemann-Pick & Batten Brasil,
Niemann-Pick Uk (Npuk),
Australian Npc Disease Foundation Inc.
International Niemann-Pick Disease Registry (Inpdr)'s categories are Hospitals and Health Care
International Niemann-Pick Disease Registry (Inpdr)'s founding year is 2018
