Comparison of specialist ataxia centres with non-specialist services in terms of treatment, care, health services resource utilisation and costs in the UK using patient-reported data

Autor: Stephen Morris, Julie Vallortigara, Julie Greenfield, Barry Hunt, Paola Giunti, Deborah Hoffman, Suzanne Booth

Publikováno v: BMJ Open, Vol 14, Iss 9 (2024)

Objectives This study aims to assess the patient-reported benefits and the costs of coordinated care and multidisciplinary care at specialist ataxia centres (SACs) in the UK compared with care delivered in standard neurological clinics.Design A patie

Externí odkaz: https://doaj.org/article/5ce19225f4494407a5cd288754c5b0d9

Patient pathways for rare diseases in Europe: ataxia as an example

Autor: Julie Vallortigara, Julie Greenfield, Barry Hunt, Deborah Hoffman, Carola Reinhard, Holm Graessner, Antonio Federico, Vinciane Quoidbach, Steve Morris, Paola Giunti

Publikováno v: Orphanet Journal of Rare Diseases, Vol 18, Iss 1, Pp 1-10 (2023)

Abstract Background Progressive ataxias are rare and complex neurological disorders that represent a challenge for the clinicians to diagnose and manage them. This study explored the patient pathways of individuals attending specialist ataxia centres

Externí odkaz: https://doaj.org/article/e065d538ca3d4f04a022a5f8a436d69d

A Qualitative Study to Characterize the Humanistic Burden of Kabuki Syndrome in the United States and Canada

Autor: Deborah Hoffman, Christina Theodore-Oklota, Deborah S. Hartman, Hans T. Bjornsson

Publikováno v: Advances in Therapy

Introduction Kabuki syndrome is a rare congenital condition characterized clinically by unique facial features, abnormalities in the skeleton, finger pad abnormalities, and developmental delays, as well as a range of other health issues. Existing res

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::18f344a80dd9d3a07926421e340a0822
http://europepmc.org/articles/PMC8799562

Frequency and Prognostic Significance of Clinical Fluctuations Before Hospital Arrival in Stroke

Autor: Jose G. Romano, Hannah Gardener, Eric E. Smith, Iszet Campo-Bustillo, Yosef Khan, Sofie Tai, Nikesha Riley, Ralph L. Sacco, Pooja Khatri, Heather M. Alger, Brian Mac Grory, Deepak Gulati, Navdeep S. Sangha, Karin E. Olds, Curtis G. Benesch, Adam G. Kelly, Scott S. Brehaut, Amit C. Kansara, Lee H. Schwamm, Scott Moody, Weiping Ye, Vena Sobhawongse, Jeffrey M. Craig, Heloisa Pearson, Deborah Summers, Christine Boerman, Christy Rice, Robin Kintner, Mayumi Oka, Sarah Baran, Christina Roels, Maureen Dosunmu, Cherylee W. J. Chang, Jennifer Moran, Denise Ditrich, Nicholas Lanciano, Aimee Mann, Charles E. Romero, Becky Thiele, David Salvatore, Annette Taylor, Neel Shah, Rodney Leacock, Angel Rochester, Fanny Guillerminet, Jerry C. Martin, Johnny Jones, Nicol Brandon, Vikas Grover, Maryika Gibson, Maheen Malik, Carol Mechem, William R. Logan, Camilla Cook, Muhib A Khan, Christa Rood, Arun Babu, Leah Steinig, Jestin Carlson, Melanie Henderson, Gabriel Vidal, Bethany Jennings, Jennifer Lynch, Jessica Ratcliff, Kathryn Kirchoff, Khadean Moncrieffe, Jennifer Rasmussen-Winkler, Leigh Allen, Gary Thompson, Christopher Firek, Stephen Martino, Baher Georgy, Gillian L. Gordon-Perue, Nina Vekima, Kasey Gildersleeve, Marian Skewes, Christina Valdovinos, Timothy C. Parsons, Cynthia Marques, John W. Chen, David Lombardi, Brenda Perez, Amer Malik, Kathy Hesse, Amy Guzik, Sandra E. Norona, Robert Hoesch, Jacki Anderson, Dorothea Altschul, Farah Fermin, Miran Salgado, Jonathan Muller, Indrani Acosta, Brooke Hartwell, Terry A. Neill, Carrie Hundley, Abhineet Chowdhary, Tina Fortney, Jose Rafael Romero, Brandon Finn, Refat Assad, Maggie Ellithorpe, Rebecca Sugg, Susan Hetzel, Muhammad M. Alvi, Jay Sherman, Jonathan Hartman, Tashia Orr, Ankur Garg, Melissa Turner, Curtis Given, Sara Renfrow, Jeffrey Hilburn, Ellen Looney, Christopher Commichau, Paul Jarvis, Changsoo Hahm, Melissa Mccaulley, Angel Pulido, Sergio Michel, Nima Ramezan-Arab, Françoise Toussaint- Jones, Anna Khanna, Esther Olasoji, Armistead Williams, Elizabeth Purrington, Ratna Reddy, Renee Potter, Bhupat Desai, Karen Tse-Chang, Laurence Ufford, Leslie Drager, Keith O. Jones, Teresa Ellebusch, Michelle Dobrzynski, Elizabeth H. Wise, Ann Jerde, Gauhar Chaudhary, Robyn McLean, Joseph Hanna, Dana Cook, Franklin Marden, Jennifer Orde, Ajay Arora, Shawna Miller, Raymond Reichwein, Deborah Hoffman, Kelly Matmati, Nabil Matmati, Kumiko Owada, Laura Murphy, Ashish Masih, Bethany Fife, Larry Shepherd, Matthew Holzmann, Stephen Gancher, Sabrina Enoch, Matthew Smith, Denise Goings, Joseph Mazzola, Edward Plyler, Lisa Landers, James Napier, Laura Thoreson, Amer Alshekhlee, Michelle Raymond, Tarakad Ramachandran, Michael Jorolemon, David Padalino, Collin Maloney, Jenny Rae Mott, Laxmi P. Dhakal, Cindy Murphy, Truman J. Milling, Patrick Lawrence, Harish Shownkeen, Kathy Hansen, Paul A. Cullis, Lynne Froehlich, Sajjad Mueed, Ryan Pavolka, Steven R. Levine, Nadege Gilles, Laura LaChance, Kanwal Nayyar, Karen Klein, Rose Dotson, Kristopher Rowe, Elisheva Coleman, Emily Sayles, Rajan Gadhia, Jason Lee, Paul W. Lewis, Jenny Nunley, Rehan Sajjad, Carol Halliday, Angelos Katramados, Theresa Holmes, Rashmikant Kothari, Linda Mader, Fen Lei Chang, Kelly Western, Kinjal Desai, Colleen Kehr, Gary Reese, Ashu Jadhav, Mackenzie Steinbach, Jeffrey Saver, Gilda Avila, Janice A. Miller, Alicia Gneiting, Matthew S. Tenser, Sarah Burke

Publikováno v: Stroke. 53(2)

Background and Purpose: Clinical fluctuations in ischemic stroke symptoms are common, but fluctuations before hospital arrival have not been previously characterized. Methods: A standardized qualitative assessment of fluctuations before hospital arri

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::ded998faabc36a5f9d8cd726a7e54eca
https://pubmed.ncbi.nlm.nih.gov/34645285

Quantifying what matters most to patients and care partners in Alzheimer's disease

Autor: Deborah Hoffman, Russ Paulsen, Brett Hauber, Ann Hartry, Daniel Lee, Dan Wieberg, Dana B. DiBenedetti, Glen Wunderlich, Michele Potashman, Leigh F. Callahan, Ian N. Kremer

Publikováno v: Alzheimer's & Dementia. 16

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_________::42f79de99d2fc946d90428e5a684be70
https://doi.org/10.1002/alz.040095