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Volume 13 Supplement 1

PHARE-M: Quality Improvement Program for Cystic Fibrosis Care in France

Research

The publication of this supplement was supported by the French Ministry of Health to the research project PREPS 12008099 (Decision PRePS Call for Project December 5th 2012) including the related publications. Funds were allocated to the Ildys Foundation, promotor of the project. The articles have undergone the journal's standard peer review process for supplements. GR was responsible for the PHARE-M training program and the PHARE-M Performance Research Study. PL declares that they have no competing interests.

Edited by Gilles Rault and Pierre Lombrail.

  1. Between 2002 and 2006 France launched a national cystic fibrois (CF) newborn screening program; organized a network of specialized CF care centers; and issued CF diagnostic and treatment standards. To continue...

    Authors: Kathryn A. Sabadosa, Marjorie M. Godfrey and Bruce C. Marshall

    Citation: Orphanet Journal of Rare Diseases 2018 13(Suppl 1):13

    Content type: Research

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  2. An agreement, signed in 2007 by the 49 French Cystic Fibrosis Centers, included a commitment to participate, within the next 5 years, in a care quality assessment and improvement program (QIP). The objective w...

    Authors: Dominique Pougheon Bertrand, Guy Minguet, Pierre Lombrail and Gilles Rault

    Citation: Orphanet Journal of Rare Diseases 2018 13(Suppl 1):12

    Content type: Research

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  3. The Cystic Fibrosis (CF) center in Roscoff (Brittany) has been involved in therapeutic education programs (TEP) since 2006 and took part in the pilot phase of the French quality improvement program (QIP) since...

    Authors: Krista Revert, Laurence Audran, Jocelyne Pengam, Pascal Lesne and Dominique Pougheon Bertrand

    Citation: Orphanet Journal of Rare Diseases 2018 13(Suppl 1):8

    Content type: Research

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  4. The two pediatric cystic fibrosis centers (CFCs) in Paris (Robert Debré) and Nantes, France, have been developing therapeutic patient education (TPE) programs since 2006 and have been engaged in the pilot phas...

    Authors: Michele Gérardin, Anne Pesle, Dominique Pougheon-Bertrand, Pilar Léger, Céline Vallet, Tiphaine Bihouee and Valérie David

    Citation: Orphanet Journal of Rare Diseases 2018 13(Suppl 1):7

    Content type: Research

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  5. In 2010, the time on the lung transplant waiting list in Nantes University Hospital (NUH) was 9.2 months, compared to a French national median of about 4 months. The NUH transplant unit performs both heart and...

    Authors: Isabelle Danner-Boucher, Véronique Loppinet, Aurore Boxus, Claire Dary, Anne Brigitte Lambert, Marine Prieur, Céline Vallet and Adrien Tissot

    Citation: Orphanet Journal of Rare Diseases 2018 13(Suppl 1):11

    Content type: Research

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  6. The PHARE-M care quality improvement program, modeled on the US Cystic Fibrosis Quality Improvement Program, was introduced at 14 cystic fibrosis centers (CFCs) in the French Cystic Fibrosis Network between 20...

    Authors: Dominique Pougheon Bertrand, Emmanuel Nowak, Clémence Dehillotte, Lydie Lemmonier and Gilles Rault

    Citation: Orphanet Journal of Rare Diseases 2018 13(Suppl 1):10

    Content type: Research

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  7. The French Cystic Fibrosis Registry takes a census of the population of patients and records their annual data transmitted by Cystic Fibrosis Centers (CFCs). Quality of patient data has been a focus in the pas...

    Authors: Nadine Pellen, Laëtitia Guéganton, Dominique Pougheon Bertrand and Gilles Rault

    Citation: Orphanet Journal of Rare Diseases 2018 13(Suppl 1):9

    Content type: Research

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  8. Quality Improvement Programs (QIP) in cystic fibrosis (CF) care have emerged as strategies to reduce variability of care and of patient outcomes among centres facilitating the implementation of Best Practices ...

    Authors: Dominique Pougheon Bertrand, Guy Minguet, Rémi Gagnayre and Pierre Lombrail

    Citation: Orphanet Journal of Rare Diseases 2018 13(Suppl 1):19

    Content type: Research

    Published on: