The evolution of the mitochondrial disease diagnostic odyssey by John L. P. Thompson, Amel Karaa, Hung Pham, Philip Yeske, Jeffrey Krischer, Yi Xiao, Yuelin Long, Amanda Kramer, David Dimmock, Amy Holbert, Cliff Gorski, Kristin M. Engelstad, Richard Buchsbaum, Xiomara Q. Rosales, Michio Hirano

“…Mitochondrial diagnosis brings extensive benefits through treatment changes and increased membership in and support of advocacy groups. Conclusions Because TOD is long and NDOCS high, there is great potential for shortening the mitochondrial odyssey. …”
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Patients’ priorities and expectations on an EU registry for rare bone and mineral conditions by Muhammad Kassim Javaid, Marina Mordenti, Manila Boarini, Luca Sangiorgi, ERN BOND Working Group, Ingunn Westerheim, Inês Alves, Rebecca Tvedt Skarberg, Natasha M. Appelman-Dijkstra, Corinna Grasemann

“…Methods To understand the user needs, the European Reference Network on Rare Bone Diseases (ERN BOND) and European Patient Advocacy Groups developed and implemented a multinational survey about the patient’s preferred database content and functionality through an iterative consensus process. …”
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COVID-19 pandemic impairs medical care of vasculitis patients in Germany: Results of a national patient survey by Anna Kernder, Anna Kernder, Tim Filla, Tim Filla, Kirsten de Groot, Bernhard Hellmich, Julia Holle, Peter Lamprecht, Frank Moosig, Nikolas Ruffer, Nikolas Ruffer, Christof Specker, Stefan Vordenbäumen, Matthias Schneider, Matthias Schneider, Gamal Chehab, Gamal Chehab

“…ObjectiveTo analyze the impact of the COVID-19 pandemic on medical care and vaccination acceptance of vasculitis patients in Germany.MethodsA web-based national survey was developed by rheumatology centers and vasculitis patient advocacy groups. The survey was distributed nationwide by mail and flyers and could be accessed via a QR-code or weblink from December 2021 to April 2022. …”
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Sarcoidosis Illuminations on Living During COVID-19: Patient Experiences of Diagnosis, Management, and Survival Before and During the Pandemic by Lesley Ann Saketkoo MD, MPH, Kelly Jensen MD, MPH, Dimitra Nikoletou PhD, MSc, Jacqui J. Newton, Frank J. Rivera BA, Mike Howie, Rodney K. Reese, Melanie Goodman BS, Patricia B. Hart MBA, Whitney Bembry MD, Adam Russell BA, Isabelle Lian MS, Matthew R. Lammi MD, MSCR, Mary Beth Scholand MD, Anne-Marie Russell PhD, APRN, ATSF

“…Recruitment occurred by self-referral through patient advocacy groups. Results: A total of 28 people living with sarcoidosis participated. …”
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Job strain and the risk of inflammatory bowel diseases: individual-participant meta-analysis of 95,000 men and women. by Katriina Heikkilä, Ida E H Madsen, Solja T Nyberg, Eleonor I Fransson, Kirsi Ahola, Lars Alfredsson, Jakob B Bjorner, Marianne Borritz, Hermann Burr, Nico Dragano, Jane E Ferrie, Anders Knutsson, Markku Koskenvuo, Aki Koskinen, Martin L Nielsen, Maria Nordin, Jan H Pejtersen, Jaana Pentti, Reiner Rugulies, Tuula Oksanen, Martin J Shipley, Sakari B Suominen, Töres Theorell, Ari Väänänen, Jussi Vahtera, Marianna Virtanen, Hugo Westerlund, Peter J M Westerholm, G David Batty, Archana Singh-Manoux, Mika Kivimäki, IPD-Work Consortium

“…Many clinicians, patients and patient advocacy groups believe stress to have a causal role in inflammatory bowel diseases, such as Crohn's disease and ulcerative colitis. …”
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Health policy to address disease-related malnutrition: a scoping review by Heather Keller, Leah Gramlich, Carlota Basualdo-Hammond, Katherine L Ford, Roseann Nasser, Melita Avdagovska, Ainsley Malone, Judy D Bauer, M Isabel T D Correia, Diana Cardenas

“…As part of the HPT, actors included researchers, advocacy groups and DRM champions while content pertained to standard processes for nutrition care such as screening, assessment, intervention and monitoring. …”
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Inequities in Access to Tricuspid Valve Treatments by Colin M. Barker, MD, Lisa S. Kemp, PhD, Melissa Mancilla, MBA, Sarah Mollenkopf, MPH, Candace Gunnarsson, PhD, Michael Ryan, MS, Guy David, PhD

“…Policymakers and patient advocacy groups should consider this to ensure equitable access to potentially life-saving technologies.…”
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Ontario COVID-19 and Kids Mental Health Study: a study protocol for the longitudinal prospective evaluation of the impact of emergency measures on child and adolescent mental healt... by Suneeta Monga, Daphne J Korczak, Catherine S Birken, Alice Charach, Jennifer Crosbie, Evdokia Anagnostou, Katherine T Cost, Kaitlyn LaForge-MacKenzie

“…Connections with professional associations and MH advocacy groups will be leveraged to support youth MH policy in relation to EMs. …”
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CHILD-BRIGHT READYorNot Brain-Based Disabilities Trial: protocol of a randomised controlled trial (RCT) investigating the effectiveness of a patient-facing e-health intervention de... by Shelley Doucet, Sarah Gander, Lehana Thabane, Sarah Zaidi, Andrew Mackie, Roger Stoddard, Myla E Moretti, Rima Azar, Jan Willem Gorter, Lonnie Zwaigenbaum, Wendy J Ungar, Khush Amaria, Adrienne Kovacs, Ronen Rozenblum, Barbara Galuppi, Linda Nguyen, Sonya Strohm, Nadilein Mahlberg, Alicia Via-Dufresne Ley, Ariane Marelli, Donna Thomson, JoAnne Mosel, Connie Putterman, Kinga Pozniak, Nathan Tasker, Julia Hanes, Kyle Chambers, Jessica Havens, Claire Dawe-McCord, Dana Arafeh, Hana Alazem, John Andersen, Kerry Boyd, Caitlin Cassidy, Jamie Churchill, CJ Curran, Anne Fournier, Anna McCormick, Ronit Mesterman, Maryam Oskoui, Janet Rennick, Jordan Sheriko, Kathy Speechley, Kelly Wynne, Fabiola Breault, Yomna Elshamy, Rocio Gutierrez, Hashaam Hasan, Rhiannon Hicks, André Pépin, Rochelle Sorzano, Jennifer Zwicker

“…Study findings will be shared with the academic and stakeholder community, including dissemination of teaching and training tools through patient associations, and patient and family advocacy groups.Trial registration number NCT03852550.…”
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Public Talks and Science Listens: A Community-Based Participatory Approach to Characterizing Environmental Health Risk Perceptions and Assessing Recovery Needs in the Wake of Hurri... by J. Sullivan, B. Parras, R. St. Marie, W. Subra, S. Petronella, J. Gorenstein, R. Fuchs-Young, R.K. Santa, A. Chavarria, J. Ward, P. Diamond

“…The project provided useful heuristics for disaster response and management planning and a platform for future collaborative efforts in environmental health assessment and risk communication with local advocacy groups in south Terrebonne-Lafourche parishes.…”
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Protocol for a telephonic mixed methods study to understand needs and find solutions for bereaved dementia caregivers by Zachary G Baker, Mary Gemma O’Donnell, Sabrina Garcia-Arias, Yingyan Huang, Joahana Segundo, Ashley N Millenbah, Olivia M Neubert, Isabel Huerta

“…The study team will share findings widely through academic publications, conferences and targeted outreach to advocacy groups and healthcare professionals, while also providing concise summaries of results to participants and making them accessible through the lab’s website.…”
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Lessons from a multidisciplinary partnership involving women parliamentarians to address the overuse of caesarean section in Italy by Ana Pilar Betran, Walter Ricciardi, Pilar Montilla, Francesca Merzagora, Elisa Scolaro, Elena Meli, Adriana Bazzi, Giorgio Vittori, Flavia Bustreo, Rosanna Boldi, Maria Rizzoti, Mario Merialdi

“…Limited attention has been given to examining multidisciplinary and advocacy activities that could reduce unnecessary CS by raising awareness and engaging the media, advocacy groups, healthcare professionals and politicians. …”
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Economic evaluations of human schistosomiasis interventions: a systematic review and identification of associated research needs [version 2; peer review: 2 approved] by Hugo C. Turner, Michael D. French, Antonio Montresor, Charles H. King, David Rollinson, Jaspreet Toor

“…This finding has important implications for policymakers, advocacy groups and potential funders. However, there are several important inconsistencies and research gaps (such as how the health benefits of interventions are quantified) that need to be addressed to identify the resources required to achieve schistosomiasis control and elimination.…”
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Contextual determinants of family-driven care implementation in juvenile justice settings by Kaitlin N. Piper, Alexandra Jahn, Cam Escoffery, Briana Woods-Jaeger, David P. Schwartz, Cathy Smith-Curry, Jessica Sales

“…Abstract Introduction Engaging families in behavioral health services is a high priority for juvenile justice (JJ) systems and family advocacy groups. Family-driven care (FDC) enhances family engagement and decision-making power in youth behavioral health services, ultimately, improving youth and family mental health and substance abuse outcomes. …”
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Recommendations to enable drug development for inherited neuropathies: Charcot-Marie-Tooth and Giant Axonal Neuropathy [v2; ref status: indexed, http://f1000r.es/3am] by Lori Sames, Allison Moore, Renee Arnold, Sean Ekins

“…We propose that using the Global Registry of Inherited Neuropathy (GRIN) could be useful for many of these studies. Patient advocacy groups and professional organizations (such as the Hereditary Neuropathy Foundation (HNF), Hannah's Hope Fund (HHF), The Neuropathy Association (TNA) and the American Association of Neuromuscular and Electrodiagnostic Medicine (AANEM) can play a central role in educating clinicians and patients. …”
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Research activity and capability in the European reference network MetabERN by Jean-Michel Heard, Cinzia Bellettato, Corine van Lingen, Maurizio Scarpa, the MetabERN collaboration group

“…Marginal activity in human and social sciences points out the limited multidisciplinary constitution of the responding teams with possible consequences on their current capability to participate to patient’s empowerment programs and efficiently collaborate with patient’s advocacy groups.…”
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Enhancing public dialogue about inclusion in school education: a citizens’ panel pilot by Brahm Norwich, Rob Webster

“…Lessons drawn show how deliberative methods used by advocacy groups, protest movements and non-governmental organisations in support of more transformational change can be developed in ways that enable young people with SEN/D to participate and have their voices heard.…”
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The needs of persons with chronic health conditions to maintain or return to work 30 years after transformation from socialism into capitalism – a preliminary report from the Polis... by Aleksander Gałaś, Aleksandra Piłat, Beata Tobiasz–Adamczyk, Matilde Leonardi

“…In Poland, 59 respondents diagnosed with different chronic diseases were identified through advocacy groups. An on-line survey was conducted to collect information on their needs and expectations. …”
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Designing a model for changing student admission policy with learning approach by Marziyeh Astaraki, Mehraban Hadipeykani, Akbar Etebarian

“…Similarly, in order to confirm the presented model in the quantitative section, The data collection tool in this section is a researcher-made question.For data analysis in a quantitative part, the SmartPLS software was used, which finally confirmed the proposed model.In this study, the researcher respect to the exogenous dimension requires attention to the wishes and needs of the community, the role of advocacy groups,interest groups and the media, population developments and ideological issues, political and economic conditions governing society and the status of volunteers. …”
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Public support for neonatal screening for Pompe disease, a broad-phenotype condition by Weinreich Stephanie, Rigter Tessel, van El Carla, Dondorp Wybo, Kostense Pieter, van der Ploeg Ans T, Reuser Arnold JJ, Cornel Martina, Hagemans Marloes

“…First-tier screening flags both classic infantile and late-onset Pompe disease, which challenges current screening criteria. Previously, advocacy groups have sometimes supported expanded neonatal screening more than professional experts, while neutral citizens' views were unknown. …”
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