viernes, 9 de febrero de 2018

Orphanet Journal of Rare Diseases | Home page

Orphanet Journal of Rare Diseases | Home page

New Articles For BioMed Central:

Orphanet Journal of Rare Diseases

The following new articles have just been published in Orphanet Journal of Rare Diseases

RESEARCH

A quality improvement program to improve nutritional status of children with Cystic Fibrosis aged 2-12 years old over a 3 year period at CF center Roscoff, Brittany

Krista Revert, Laurence Audran, Jocelyne Pengam, Pascal Lesne and Dominique Pougheon Bertrand
Orphanet Journal of Rare Diseases 2018, 13:8 | Published on: 8 February 2018

RESEARCH

Trans-Atlantic collaboration: applying lessons learned from the US CF Foundation quality improvement initiative

Kathryn A. Sabadosa, Marjorie M. Godfrey and Bruce C. Marshall
Orphanet Journal of Rare Diseases 2018, 13:13 | Published on: 8 February 2018

RESEARCH

A quality improvement program for adolescents with cystic fibrosis: focus on psychosocial skills

Michele Gérardin, Anne Pesle, Dominique Pougheon-Bertrand, Pilar Léger, Céline Vallet, Tiphaine Bihouee and Valérie David
Orphanet Journal of Rare Diseases 2018, 13:7 | Published on: 8 February 2018

RESEARCH

A quality improvement program to reduce the time on the lung transplant waiting list at the Nantes University Hospital

Isabelle Danner-Boucher, Véronique Loppinet, Aurore Boxus, Claire Dary, Anne Brigitte Lambert, Marine Prieur, Céline Vallet and Adrien Tissot
Orphanet Journal of Rare Diseases 2018, 13:11 | Published on: 8 February 2018

INTRODUCTION

Strategies for care quality improvement in Cystic Fibrosis

Gilles Rault and Pierre Lombrail
Orphanet Journal of Rare Diseases 2018, 13:26 | Published on: 8 February 2018

RESEARCH

Quality of care in cystic fibrosis: assessment protocol of the French QIP PHARE-M

Dominique Pougheon Bertrand, Emmanuel Nowak, Clémence Dehillotte, Lydie Lemmonier and Gilles Rault
Orphanet Journal of Rare Diseases 2018, 13:10 | Published on: 8 February 2018

RESEARCH

Lessons from patient and parent involvement (P&PI) in a quality improvement program in cystic fibrosis care in France

Dominique Pougheon Bertrand, Guy Minguet, Rémi Gagnayre and Pierre Lombrail
Orphanet Journal of Rare Diseases 2018, 13:19 | Published on: 8 February 2018

RESEARCH

Lessons from the on-site quality audit of data transmitted to the French cystic fibrosis registry

Nadine Pellen, Laëtitia Guéganton, Dominique Pougheon Bertrand and Gilles Rault
Orphanet Journal of Rare Diseases 2018, 13:9 | Published on: 8 February 2018

RESEARCH

Long term clinical history of an Italian cohort of infantile onset Pompe disease treated with enzyme replacement therapy

Rossella Parini, Paola De Lorenzo, Andrea Dardis, Alberto Burlina, Alessandra Cassio, Paolo Cavarzere, Daniela Concolino, Roberto Della Casa, Federica Deodato, Maria Alice Donati, Agata Fiumara, Serena Gasperini, Francesca Menni, Veronica Pagliardini, Michele Sacchini, Marco Spada…
Orphanet Journal of Rare Diseases 2018, 13:32 | Published on: 8 February 2018

RESEARCH

Introduction of a collaborative quality improvement program in the French cystic fibrosis network: the PHARE-M initiative

Dominique Pougheon Bertrand, Guy Minguet, Pierre Lombrail and Gilles Rault
Orphanet Journal of Rare Diseases 2018, 13:12 | Published on: 8 February 2018

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