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Akademický článek

Diagnostic agreement among experts assessing adults presenting with possible cystic fibrosis: need for improvement and implications for patient care

Autor: Alessandro N. Franciosi, April Tanzler, Jodi Goodwin, Pearce G. Wilcox, George M. Solomon, Albert Faro, Noel G. McElvaney, Damian G. Downey, Bradley S. Quon

Publikováno v: ERJ Open Research, Vol 8, Iss 4 (2022)

Background Increasing awareness of milder presentations of cystic fibrosis (CF) and greater interest in non-CF bronchiectasis are likely to lead to more CF screening by respiratory clinicians. As a result, adults who may not strictly fulfil CF diagno

Externí odkaz: https://doaj.org/article/6f617089f9e54fb9bd7aabebc4efc679

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Prevalence of unmet pain and symptom management needs in adults with cystic fibrosis

Autor: Ethan Dubin, Jane Lowers, Elisabeth P. Dellon, Sarah Hempstead, Albert Faro, Erin Tallarico, Anne Fitzpatrick, William R Hunt, Dio Kavalieratos

Publikováno v: Journal of Cystic Fibrosis. 22:352-355

Although people living with CF (PLwCF) commonly report pain and other symptoms, little is known regarding their experiences of living with and accessing treatment for burdensome symptoms.PLwCF completed online questionnaires assessing symptom prevale

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::3a0bd2acbfc8194acc809dbebd0eaf44
https://doi.org/10.1016/j.jcf.2022.08.006

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Real-world Associations of US Cystic Fibrosis Newborn Screening Programs With Nutritional and Pulmonary Outcomes

Autor: Margaret Rosenfeld, Josh Ostrenga, Elizabeth A. Cromwell, Amalia Magaret, Rhonda Szczesniak, Aliza Fink, Michael S. Schechter, Albert Faro, Clement L. Ren, Wayne Morgan, Don B. Sanders

Publikováno v: JAMA pediatrics. 176(10)

ImportanceNewborn screening (NBS) for cystic fibrosis (CF) has been universal in the US since 2010, but its association with clinical outcomes is unclear.ObjectiveTo describe the real-world effectiveness of NBS programs for CF in the US on outcomes u

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::8558ec3ad46880eb45bc6069d9b1fc09
https://pubmed.ncbi.nlm.nih.gov/35913705

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Position paper: Models of post-transplant care for individuals with cystic fibrosis

Autor: Edward McKone, Kathleen J. Ramos, Cecilia Chaparro, Joshua Blatter, Ramsey Hachem, Michael Anstead, Fanny Vlahos, Abby Thaxton, Sarah Hempstead, Thomas Daniels, Michelle Murray, Amparo Sole, Robin Vos, Erin Tallarico, Albert Faro, Joseph M. Pilewski

Publikováno v: Journal of Cystic Fibrosis.

There is no consensus on the best model of care for individuals with CF to manage the non-pulmonary complications that persist after lung transplant. The CF Foundation virtually convened a group of international experts in CF and lung-transplant care

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::8e70f7683ce0bba54b864fee3ad8477a
https://doi.org/10.1016/j.jcf.2023.02.011

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Assessing Practices, Beliefs, and Attitudes about Palliative Care among People with Cystic Fibrosis, Their Caregivers, and Clinicians: Results of a Content Analysis

Autor: Albert Faro, Elaine Chen, Sarah E. Hempstead, Jessica Goggin, Dio Kavalieratos, Christopher H. Goss, Melissa Basile, Lincy Jojan, Elisabeth P. Dellon, Anna M. Georgiopoulos, Mara R. Hobler

Publikováno v: J Palliat Med

Background: Individuals with cystic fibrosis (CF) experience symptoms affecting quality of life and may benefit from palliative care (PC). Objectives: To present results of content analysis from open-ended survey questions assessing knowledge and exp

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::d4ef69c31bf14854b8b8f2b67aa1c826
https://doi.org/10.1089/jpm.2020.0725

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Survival and Lung Transplant Outcomes for Individuals With Advanced Cystic Fibrosis Lung Disease Living in the United States and Canada

Autor: Aliza K. Fink, Albert Faro, Joshua S. Ostrenga, Sanja Stanojevic, Alexander Elbert, Anne L. Stephenson, Bradley S. Quon, Christopher H. Goss, Kathleen J. Ramos, Xiayi Ma, Bruce C. Marshall, Jenna Sykes, Kristofer Petren

Publikováno v: Chest. 160:843-853

Background Understanding how health outcomes differ for patients with advanced cystic fibrosis (CF) lung disease living in the United States compared with Canada has health policy implications. Research Question What are rates of lung transplant (LTx

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_________::b7d36090d3b099bf9fa3be777af09a83
https://doi.org/10.1016/j.chest.2021.04.010

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Contemporary cystic fibrosis incidence rates in Canada and the United States

Autor: Anne L. Stephenson, Sana Swaleh, Jenna Sykes, Sanja Stanojevic, Xiayi Ma, Bradley S. Quon, Albert Faro, Bruce Marshall, Kathleen J. Ramos, Josh Ostrenga, Alex Elbert, Sameer Desai, Elizabeth Cromwell, Christopher H. Goss

Publikováno v: Journal of Cystic Fibrosis.

The availability of new diagnostic algorithms for cystic fibrosis (CF), changing population demographics and programs that impact family planning decisions can influence incidence rates. Thus, previously reported incidence rates in Canada and the Uni

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::8ff196b16313856c39891c5b0135b20d
https://doi.org/10.1016/j.jcf.2022.10.008

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Bridging the survival gap in cystic fibrosis: An investigation of lung transplant outcomes in Canada and the United States

Autor: Kristofer Petren, Albert Faro, Bradley S. Quon, Anne L. Stephenson, Joshua S. Ostrenga, Christopher H. Goss, C. Chaparro, Aliza K. Fink, Sanja Stanojevic, Jenna Sykes, Alexander Elbert, Bruce C. Marshall, Kathleen J. Ramos, Xiayi Ma

Publikováno v: J Heart Lung Transplant

Previous literature in cystic fibrosis (CF) has shown a 10-year survival gap between Canada and the United States (US). We hypothesized that differential access to and survival after lung transplantation may contribute to the observed gap. The object

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::c0f3e47b15a00d0998e9e840db14d18d
https://doi.org/10.1016/j.healun.2020.12.001

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