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Literature DB >> 29735358

Use of a rare disease patient registry in long-term post-authorisation drug studies: a model for collaboration with industry.

Diana Bilton¹, Noreen Caine², Steve Cunningham³, Nicholas J Simmonds⁴, Rebecca Cosgriff², Siobhán B Carr⁵.

Abstract

Entities: Species

Mesh：

Year: 2018 PMID： 29735358 DOI： 10.1016/S2213-2600(18)30192-9

Source DB: PubMed Journal: Lancet Respir Med ISSN： 2213-2600 Impact factor: 30.700

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3 in total

1. Improvements needed to support people living and working with a rare disease in Northern Ireland: current rare disease support perceived as inadequate.

Authors: Julie McMullan; Ashleen L Crowe; Caitlin Bailie; Kerry Moore; Lauren S McMullan; Nahid Shamandi; Helen McAneney; Amy Jayne McKnight
Journal: Orphanet J Rare Dis Date: 2020-11-09 Impact factor: 4.123

2. Demographic and clinical characteristics of patients with α₁-antitrypsin deficiency genotypes PIZZ and PISZ in the Spanish registry of EARCO.

Authors: María Torres-Durán; José Luis López-Campos; Juan Luis Rodríguez-Hermosa; Cristina Esquinas; Cristina Martínez-González; José María Hernández-Pérez; Carlota Rodríguez; Ana Bustamante; Francisco Casas-Maldonado; Miriam Barrecheguren; Cruz González; Marc Miravitlles
Journal: ERJ Open Res Date: 2022-09-26

3. Protocol for the EARCO Registry: a pan-European observational study in patients with α₁-antitrypsin deficiency.

Authors: Timm Greulich; Alan Altraja; Miriam Barrecheguren; Robert Bals; Jan Chlumsky; Joanna Chorostowska-Wynimko; Christian Clarenbach; Luciano Corda; Angelo Guido Corsico; Ilaria Ferrarotti; Cristina Esquinas; Caroline Gouder; Ana Hećimović; Aleksandra Ilic; Yavor Ivanov; Sabina Janciauskiene; Wim Janssens; Malcolm Kohler; Alvils Krams; Beatriz Lara; Ravi Mahadeva; Gerry McElvaney; Jean-François Mornex; Karen O'Hara; David Parr; Eava Piitulainen; Karin Schmid-Scherzer; Niels Seersholm; Robert A Stockley; Jan Stolk; Maria Sucena; Hanan Tanash; Alice Turner; Ruxandra Ulmeanu; Marion Wilkens; Arzu Yorgancioğlu; Ana Zaharie; Marc Miravitlles
Journal: ERJ Open Res Date: 2020-03-02

3 in total

Use of a rare disease patient registry in long-term post-authorisation drug studies: a model for collaboration with industry.

1. Improvements needed to support people living and working with a rare disease in Northern Ireland: current rare disease support perceived as inadequate.

2. Demographic and clinical characteristics of patients with α1-antitrypsin deficiency genotypes PI*ZZ and PI*SZ in the Spanish registry of EARCO.

3. Protocol for the EARCO Registry: a pan-European observational study in patients with α1-antitrypsin deficiency.

2. Demographic and clinical characteristics of patients with α₁-antitrypsin deficiency genotypes PIZZ and PISZ in the Spanish registry of EARCO.

3. Protocol for the EARCO Registry: a pan-European observational study in patients with α₁-antitrypsin deficiency.