Verified email-pattern data for International Niemann-Pick Disease Registry (Inpdr) is currently limited. You can still use the company insights and contact sections below.
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
- Website
- inpdr.org
- HQ
- Washington, Tyne and Wear
- Competitors
- Fabry Australia, NATIONAL NIEMANN-PICK DISEASE FOUNDATION, APCViseu, Angela Wilson Communications, International Niemann-Pick Disease Alliance (INPDA), Assura, Inc., Australian NPC Disease Foundation Inc, Astellas Pharma, Niemann-Pick UK (NPUK), ANPB - Associação Niemann-Pick & Batten Brasil.
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
Fabry Australia,
National Niemann-Pick Disease Foundation,
Apcviseu,
Angela Wilson Communications,
International Niemann-Pick Disease Alliance (Inpda),
Assura, Inc.,
Australian Npc Disease Foundation Inc,
Astellas Pharma,
Niemann-Pick Uk (Npuk),
Anpb - Associação Niemann-Pick & Batten Brasil.
International Niemann-Pick Disease Registry (INPDR)'s categories are Hospitals and Health Care
International Niemann-Pick Disease Registry (INPDR)'s founding year is 2018
Explore related pages
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International Niemann-Pick Disease Registry (INPDR) management contacts
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Top International Niemann-Pick Disease Registry (INPDR) Employees
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Jackie Imrie
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Bolton, England, United Kingdom, United Kingdom -
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Greater Richmond Region, United States2gmail.com, dominionvoiceanddata.com -
Jim Green
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Galashiels, Scotland, United Kingdom, United Kingdom -
John Lee Taggart
Communications Specialist & Filmmaker
Washington, England, United Kingdom, United Kingdom1 +447873XXXXXX
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