Interventions to improve system-level coproduction in the Cystic Fibrosis Learning Network

Autor: Rachel Gordon, Lillian O’Leary, Gregory Sawicki, Don B Sanders, David Miller, Peter J Murphy, Michael Seid, John Dickinson, Mary Lester, Catherine Hopkins, Adrienne Savant, Rebekah Brown, Preeti Sharma, Christian Merlo, Michelle Roberts, Kathryn A Sabadosa, David Hansen, Peter Michelson, Amy Filbrun, Jordan Dunitz, Christopher M Siracusa, Thida Ong, Stacy Bichl, Ahmet Uluer, Joanne Cullina, Michael Powers, Rhonda List, Lindsay Somerville, Lauren Williamson, Dana Albon, Hossein Sadeghi, Clement Ren, Thomas Keens, Nicholas Antos, Fadi Asfour, Mike Price, Kristen Nowak, Robert Balk, Erin Moore, Prigi Varghese, Cori Daines, Glenda Drake, Amy Lucero, Amanda Sharpe, Lindsey McMahon, Meghan Murray, Meghana Sathe, Traci Liberto, Rachel Linnemann, Pornchai Tirakitsoontorn, Maivy Sou, Michael Schechter, Andrea Molzhon, Karen Wunschel, Lisa A Mullen, Kyle Traver, Travis Burgett, Alex Gifford, Nicola Felicetti, Heidi Dolan, Tracey Gendreau, Danielle Beachler, Shine-Ann Pai, Stephanie Robbins, Ben McCullar, Lauren Mitchell, Andrew Scaljon, Stefanie Rushing, Golnar Raissi, Bean Corcoran, Michelle Prickett, Rachel Nelson, Stacy Allen, Lisa Greene, Sara Renschen, Betsy Price, Catherine Kier, Teresa Carney, Sandy Corr, Barbara Leyva, Jillian Salvatore, George M Solomon, Julianna Bailey, James Lawlor, Samya Z Nasr, Rebekah Raines, Catherine Enochs, Kristen Jesse, Jonathan Flath, Mackenzie Wharram, James Tolle, Susan Eastman, Nauman Chaudary, Mahsa Farsad, Kimberly Wingo, Kathryn Moffett, Erin Brozik, Paige Krack, Kevin Martin, Laura Roth, Joshua Wang, Sarah Dykes, Erin Newbill, Misty Thompson, Danielle Poulin, Breck Gamel, Srujana Bandla, David W Davison, Lindsay Silva, Raouf Amin, Maria Britto, Anna Saulitis, Kate Barnico, Cindy Murphy, Amanda Lemieux, Georgia Dangel, Melanie Lawrence, Danielle Goetz, Danielle Woerner, Megan Whelan, Katelyn Violanti, Susan Attel, Alexia Hernández Cargal, Kelly Clute, Olivia Ries, Susan Gage, Bridget Kominek, Kristin Lawrence, Megan Martin, Jessica Roach, Errin Newman, Phillip Vaden, Esther Giezendanner, Marsha Triana, Sujal Rangwalla, Meghann Weil, Randy Hunt, Emily Walker, Caroline Starnes, Kendra Adderhold, Megan Barker, Johanna Zea-Hernandez, Beth Debri, Ann Kaiser, Cindy Brown, Pi Chun Cheng, Jana Yeley, Laura Jay-Ballinger, Julian McConnie, Meghana Malapaka, Perry Aulie, Ginger Birnbaum, Cynthia Driskill, Janerisa Encarnacion, Amanda Oswald, Stephanie Fullmer, Anthony Fashoda, Laura Steinhaus, Maureen Tinley, Jame’ Vajda, Janine Cassidy, Mey Lee, Megan Akers, Susan Whitmore, Christian Santaniello, Robert Abdullah, Bryan Garcia, Cameron Crenshaw, Kandice Amos, Veronica Indihar, Lisa Shively, Anissa Hostetter, Angela Oder, Brandi Morgan, Kayla Hubley, Deborah K Froh, Holly Carroll-Owen, Lauren Miller Ahrens, Brielle Evangelista, Lucy Gettle, Tracie O'Sullivan, Autumn Bonstein, Stacey Miller, Angela Bender, Billie Jo Bennett, John Palla, Cathy O'Malley, Maria Dowell, Allison Fitch-Markham, Chladd Ford, Carolyn Heyman, Terri Laguna, Debbie Benitez, Lynn Fukushima, Martha Markovitz, Adupa Rao, Gregory Storm, Vai Jun Lam, John Mercer, Cori Muirhead, Jeff Gold, Aaron Trimble, Gopal Allada, Wendy Palmrose, Sue Sullivan, Kim Keeling, Rob Shradar, Jill Fliege, Heidi Klasna, Janelle Sorensen, Stacy Millikan, Joe Poler, Jill Rollins, Sandy Wahl, Cristy Batten, Laura Romero, Whitney Gore, Kimberly Morse, Rocio Munter, Danieli Salinas, Sylvia Sanchez, Virginia Anderson, Jami Dunn, Stephanie Gamble, Hector Gutierrez, Kelli Lachowicz, Isabel Lowell, Cathy Mims, LaShonna Stodghill, Gabriela Oates, Amanda Phillips, Linda Russo, Staci Self, Julie Desch, Ilene Hollin, Emily Kramer-Golinkoff, Pamela Mertz, Sarah Gomez, Nancy Griffin, Drew Warmin

Publikováno v: BMJ Open Quality, Vol 13, Iss 3 (2024)

Background Coproduction is defined as patients and clinicians collaborating equally and reciprocally in healthcare and is a crucial concept for quality improvement (QI) of health services. Learning Health Networks (LHNs) provide insights to integrate

Externí odkaz: https://doaj.org/article/65153dab72834c8d85fcdc291e321282

Immunoreactive Trypsinogen in Infants Born to Women with Cystic Fibrosis Taking Elexacaftor–Tezacaftor–Ivacaftor

Autor: Payal Patel, Jana Yeley, Cynthia Brown, Melissa Wesson, Barbara G. Lesko, James E. Slaven, James F. Chmiel, Raksha Jain, Don B. Sanders

Publikováno v: International Journal of Neonatal Screening, Vol 9, Iss 1, p 10 (2023)

Most people with cystic fibrosis (CF) are diagnosed following abnormal newborn screening (NBS), which begins with measurement of immunoreactive trypsinogen (IRT) values. A case report found low concentrations of IRT in an infant with CF exposed to th

Externí odkaz: https://doaj.org/article/9df5e059336346fd915532b702d71ef3

Changes in Care during the COVID-19 Pandemic for People with Cystic Fibrosis

Autor: Don B. Sanders, Runyu Wu, Tom O’Neil, Alexander Elbert, Kris Petren, Raksha Jain, Clement L. Ren

Publikováno v: Annals of the American Thoracic Society. 19:1697-1703

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::c6098b81b157ec28ace6a2de2224a19d
https://doi.org/10.1513/annalsats.202105-532oc

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

Association of site of treatment with clinical outcomes following intravenous antimicrobial treatment of a pulmonary exacerbation

Autor: M. Skalland, Christopher H. Goss, Patrick A. Flume, Natalie E. West, Umer Khan, Sonya L. Heltshe, Donald R. VanDevanter, Don B. Sanders

Publikováno v: J Cyst Fibros

BACKGROUND: In the STOP2 (Standardized Treatment of Pulmonary Exacerbations-2) study, intravenous (IV) antimicrobial treatment duration for adults with cystic fibrosis (CF) experiencing pulmonary exacerbations (PEx) was determined based on initial tr

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::7b6d66bc9c9eb80faface89d1c10aa4d
https://doi.org/10.1016/j.jcf.2021.11.009