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

Cystic fibrosis learning network telehealth innovation lab during the COVID-19 pandemic: a success QI story for interdisciplinary care and agenda setting

Autor: Rachel Gordon, Lucinda Murphy, Gregory Sawicki, Michael Seid, Rebekah Brown, Preeti Sharma, Maria T Britto, Christian Merlo, Peter Michelson, Jordan Dunitz, Christopher M Siracusa, Raouf S Amin, Thida Ong, Ahmet Uluer, Joanne Cullina, Sydney Schiff, Rhonda List, Lindsay Somerville, Lauren Williamson, Dana Albon, Hossein Sadeghi, Nicholas Antos, Fadi Asfour, Mike Price, Lacrecia Thomas, Lindsay Hoberg, Sophia Stamper, Prigi Varghese, Ella Balasa, Matthew Roman, Melanie Miner, Emily Gehring, Clifford Gammon, Mike Powers, Cori Daines, Glenda Drake, Amy Lucero, Lilly Mees, Amanda Sharpe, Lindsey McMahon, Melanie Abdelnour, Meghan Murray, Meghana Sathe, Traci Liberto, Rachel Linnemann, Alexia Hernandez Cargal, Heather Tucker, Pornchai Tirakitsoontorn, Maivy Sou, Alicia Maciel, Michael Schechter, Andrea Molzhon, Nicole Brueck, Karen Wunschel, Lisa A Mullen, Kyle Traver, Travis Burgett, Alex Gifford, Nicola Felicetti, Heidi Dolan, Tracey Gendreau, Danielle Beachler, Shine-Ann Pai, Stephanie Robbins, Zoe Orcutt, Ben McCullar, Lindsaey Deveaux, Lauren Mitchell, Andrew Scaljon, Stefanie Rushing, Virginia Birnbaum, Golnar Raissi, Bean Corcoran, Michelle Prickett, Rachel Nelson, Anne Snuggerud, Stacy Allen, Sabrina Gorry, 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, Kayla Warner, Jonathan Flath, Mackenzie Wharram, Deborah Froh, Holly Carroll-Owens, James Tolle, Susan Eastman, Marrisa Benchea, Nauman Chaudary, Mahsa Farsad, Kimberly Wingo, Kathryn Moffett, Erin Brozik, Jillian Huffman

Publikováno v: BMJ Open Quality, Vol 11, Iss 2 (2022)

Externí odkaz: https://doaj.org/article/9d6eb515bfac497e8c7fbfc114bc0e9d

Safety and efficacy of vanzacaftor–tezacaftor–deutivacaftor in adults with cystic fibrosis: randomised, double-blind, controlled, phase 2 trials

Autor: Ahmet Z Uluer, Gordon MacGregor, Pilar Azevedo, Veronica Indihar, Claire Keating, Marcus A Mall, Edward F McKone, Bonnie W Ramsey, Steven M Rowe, Ronald C Rubenstein, Jennifer L Taylor-Cousar, Elizabeth Tullis, Lael M Yonker, Chenghao Chu, Anna P Lam, Nitin Nair, Patrick R Sosnay, Simon Tian, Fredrick Van Goor, Lakshmi Viswanathan, David Waltz, Linda T Wang, Yingmei Xi, Joanne Billings, Alexander Horsley, Edward F. Nash, Marleen Bakker, Renske van der Meer, Petrus Merkus, Christof Majoor, Karen McCoy, Krishna Pancham, James Tolle, Bryon Quick, Ahmet Uluer, Emily DiMango, Adupa Rao, Santiago Reyes, Ross Klingsberg, Celeste Barreto, Victor Ortega, Donna Willey-Courand, Carsten Schwarz, Sivagurunathan Sutharsan, Rainald Fischer, Jane Davies, Jamie Duckers, Simon Doe, Harry Heijerman, George M. Solomon, Christian Merlo, Jennifer Griffonnet, Joseph Pilewski, Jordan Dunitz, Saba Sheikh, Ronald C. Rubenstein, Daniel B. Rosenbluth, Theodore Liou, Maria Indihar, Lael Yonker, Samya Nasr, Cynthia D. Brown, Gregory S. Sawicki, Jennifer Ruddy, Bryan Garcia, Andrew Braun, Alex H. Gifford, Nighat Mehdi, Maria Tupayachi Ortiz, Raksha Jain, Francisco J. Calimano, Jimmy Johannes, Cori L. Daines, Jason Fullmer, Joel Mermis, Christopher Barrios, Ngoc Ly, Brian P. Casserly, Stephan Eisenmann, Helge Hebestreit, Alexander Kiefer, Daniel Peckham, Martin Ledson, Eva Van Braeckel, Noel Gerard McElvaney, Edward McKone, Barry Plant, Lucy Burr, Daniel J. Smith, Peter Middleton, John Wilson

Publikováno v: The Lancet Respiratory Medicine, 11(6), 550-562. Elsevier Limited
VX18-121-101 & VX18-561-101 Study Groups 2023, ' Safety and efficacy of vanzacaftor–tezacaftor–deutivacaftor in adults with cystic fibrosis : randomised, double-blind, controlled, phase 2 trials ', The Lancet Respiratory Medicine, vol. 11, no. 6, pp. 550-562 . https://doi.org/10.1016/S2213-2600(22)00504-5
LANCET RESPIRATORY MEDICINE

Background: Elexacaftor–tezacaftor–ivacaftor has been shown to be safe and efficacious in people with cystic fibrosis and at least one F508del allele. Our aim was to identify a novel cystic fibrosis transmembrane conductance regulator (CFTR) modu

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::72b19fd4ef9823a3f92122d18b15dec4
https://research.vumc.nl/en/publications/0a8b171c-28b7-4da9-8e4a-5749733cacf9

Pulmonary aspiration of sinus secretions in patients with cystic fibrosis

Autor: Jacob, Nelson, Peter, Karempelis, Jordan, Dunitz, Ryan, Hunter, Holly, Boyer

Publikováno v: International forum of allergyrhinology. 8(3)

Indirect evidence suggests that sinonasal secretions are aspirated into the lungs of patients with cystic fibrosis (CF), contributing to infection, subsequent tissue damage, and decreased lung function. Our objective is to determine whether sinonasal

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=pmid________::c318878e4f6b0d1471d5f5750c6c9f3f
https://pubmed.ncbi.nlm.nih.gov/29210505

19 Year Old Patient With 'recurrent Asthma'

Autor: Kashif Raza, Jordan Dunitz

Publikováno v: D43. INTERESTING CASES OF TUMORS AND MORE.

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_________::da825636614b5580cadc87c0dbff7349
https://doi.org/10.1164/ajrccm-conference.2010.181.1_meetingabstracts.a5889