INPDR Project Overview

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Frequently Asked Questions

Security and Privacy

INPDR Security Documentation

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Project Consortium

Project Management Committee are responsible for the management and oversight of the INPDR.
    • Dr Tarek Hiwot

    • Chief Investigator,
    • Work package 1,
    • Coordination
    • Charlotte Dawson

    • Work package 6,
    • Virtual registry and information environment
  • Shaun Bolton


  • Queen Elizabeth Hospital,
  • Queen Elizabeth Medical Centre
  • Birmingham, B15 2TH UK
  • http://www.uhb.nhs.uk/
    • Jim Green

    • Work package 3
    • Evaluation
    • Miriam Evans


  • European section of the INPDA
  • Suite 2, Vermont House,
  • Tyne and Wear, Washington,
  • NE38 8LR UK
  • http://www.inpda.org
    • Bruno Bembi

    • Work package 4
    • Core Dataset
    • Andrea Dardis

    • Work package 5
    • Biochemical and Molecular diagnosis

  • University Hospital "Santa Maria della Misericordia" 
  • piazzale S. Maria della Misericordia
  • 15 Udine, 33100, ITALY
  • http://www.ospedaleudine.it
  • Paul Gissen & Philippa Mills

  • University College London
  • Gower St, London
  • WC1 E6B, UK
  • http://www.ucl.ac.uk
  • Marie Vanier & Yann Nadjar

  • Bénédicte Heron
  • Pitie-Salpetriere Hospital
  • 47, Bd de l'Hopital Paris,
  • 75013, FRANCE
  • http://www.aphp.fr/hopital/
  • Ellen Crushell & Eithna Lofty

  • Children's University Hospital
  • Temple Street 1, Dublin
  • IRELAND
  • http://www.cuh.ie/
  • Martin Hrebicek

  • Univerzita Karlova v Praze First
  • Faculty of Medicine
  • Katerinska 32
  • Institute of Inherited Metabolic Disorders
  • Ke Karlovu 2 Prague 2
  • 128 08, CZECH REPUBLIC
  • http://www.cuni.cz/
  • Isabel Hontanilla

  • Enrique Pilar, Mercedes Pineda
  • Fundacion Niemann Pick de Espana
  • Cronista Muntaner, 27 1 -1 Lleida
  • 25001, SPAIN
  • http://www.fnp.es/apoyo.php

Associate partners

As well as 11 associated partners the project has 14 collaborating partners from around the world to provide scientific insight, advice and serve on the Scientific Advisory Committee

  • Tammy Vaughan

  • Canadian Chapter of the National Niemann-Pick Disease Foundation (NNPDF)
  • Toronto, CANADA
  • http://www.nnpdf.org/
EU Logo INPDA Logo

The registry is owned by the International Niemann-Pick Disease Registry Project, and is managed by an international consortium of professionals and is hosted at the University Hospitals Birmingham NHS Foundation Trust (UHB) in the UK. The project to develop the INPDR arises from the NPDR project which has received funding from the European Union, in the framework of the Health Programme.