Preferences of Canadian Patients and Physicians for Treatment of HR+/HER2− Advanced Breast Cancer by Daniel Stellato, Marroon Thabane, Caitlin Eichten, Thomas E. Delea

“…Patients were recruited by a Canadian breast cancer patient advocacy group through email and social media. Physicians were recruited by email. (3) Results: Among 118 patients starting the survey, 23 completed ≥ 1 DCE question (19%). …”
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Preparing medical students for their educational task as physicians: important, desirable and unexplored territory by Bas PH ter Brugge, Lena Sophia Fegg, Marjo Wijnen-Meijer

“…The survey was part of the annual online survey of the Dutch medical advocacy group (DeGeneeskundestudent) amongst all medical students in the fall of 2017. …”
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Erwachsenenbildner*in? Zur (Un)Sichtbarkeit von Frauen in (un)sichtbarer Bildungsverantwortung. by Lea Pelosi

“…Because adult educators who are critical without the support of an advocacy group only speak for themselves—and often with undesired consequences. …”
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Developing Participatory Analytics Techniques to Inform the Prioritisation of Cycling Infrastructure by Oliver Lock, Christopher Pettit

“…Thirdly, it evaluates the approach in conversation with potential end-users, including government, planning practitioners, and advocacy group members. A clear preference for active participation mechanisms (86%) was articulated by current cyclists, as opposed to a reliance on the existing data available and passive data. …”
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Advocate's Viewpoint on Hereditary Breast/Ovarian Cancer by Kolling-Dandrieu Francisca

“…</p> <p>Primarily, the goals and working methods of the advocacy group specialised in Hereditary Breast/Ovarian Cancer of the Dutch Breast Cancer Patient Organisation known as BorstkankerVereniging Nederland (BVN) are explained. …”
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Identification and Evaluation of African Lion (<i>Panthera leo</i>) Cub Welfare in Wildlife-Interaction Tourism by Ann Wilson, Clive J. C. Phillips

“…A workshop was held with 15 lion-experienced stakeholders, including government officials, nature conservationists, animal welfare organisations, lion breeders, lion handlers, an animal ethologist, wildlife veterinarian, wildlife rehabilitation specialist and an animal rights advocacy group representative. Individual representatives nominated a range of welfare concerns, and 15 were identified for discussion and prioritisation. …”
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Circumstances Leading To Finding Out about Being Donor-Conceived and Its Perceived Impact on Family Relationships: A Survey of Adults Conceived via Anonymous Donor Insemination in... by Tobias Bauer, Anne Meier-Credner

“…Fifty-nine donor-conceived adults were recruited via the support and advocacy group <i>Verein Spenderkinder</i>. Participants had been born in heterosexual-couple-parented families, were between 21 and 46 years old, and found out about the circumstances of their conception between 5 and 46 years of age. …”
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Pengaruh advokasi pelayanan gizi dan penyuluhan terhadap jumlah kunjungan pasien di Poliklinik Gizi Rumah Sakit Umum Raden Mattaher Jambi by Mawarningsih Mawarningsih, Yayi Suryo Prabandari, R Dwi Budiningsari

“…There were 32 respondents of advocacy group and 180 respondents of socialization group. …”
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Symptoms and impacts of familial chylomicronemia syndrome: a qualitative study of the patient experience by Kate Williams, Georgina Tickler, Pedro Valdivielso, Jordi Alonso, Montserrat Vera-Llonch, Laia Cubells, Sarah Acaster

“…Interview guides were developed with input from a patient advocacy group to explore the symptoms, impacts and management of FCS. …”
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The diagnostic journey of genetically defined neurodevelopmental disorders by Juliana Simon, Carly Hyde, Vidya Saravanapandian, Rujuta Wilson, Charlotte Distefano, Aaron Besterman, Shafali Jeste

“…Several key themes were identified: (1) delays between initial caregiver observations and formal developmental or genetic diagnoses; (2) practical barriers to clinical evaluation and care, including long wait times for an appointment, lack of insurance coverage, availability of local evaluations, transportation difficulties, and native language differences; (3) the importance of being part of a patient advocacy group to help navigate the diagnostic journey; and (4) unique challenges faced by adults (18 years or older). …”
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Development of a plain-language library of educational resources for research participants by Elizabeth Witte, Sabune J. Winkler, Joanna Myerson, Aaron Kirby, Jessica Biggers, Jacquelyn-My Do, Mary-Tara Roth, Alyssa K. Gateman, Enrico Cagliero, Barbara E. Bierer

“…The New England Research Subject Advocacy Group was formed to explore common issues, interests, and concerns related to the experience of participation in clinical research and research participant safety. …”
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Online Chats to Assess Stakeholder Perceptions of Meat Chicken Intensification and Welfare by Tiffani J. Howell, Vanessa I. Rohlf, Grahame J. Coleman, Jean-Loup Rault

“…Across six online chats, 25 participants (general public, n = 8; animal advocacy group, n = 11, meat chicken industry, n = 3; research or veterinary practice who had experience with poultry but no declared industry affiliation, n = 3) discussed meat chicken intensification and welfare. …”
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Patient-reported burden of hereditary transthyretin amyloidosis on functioning and well-being by Andrew Lovley, Kimberly Raymond, Spencer D. Guthrie, Michael Pollock, Vaishali Sanchorawala, Michelle K. White

“…Results Fourteen adults with hATTR amyloidosis, recruited from a patient advocacy group or an academic clinical center, participated in individual semi-structured interviews either in person or by telephone. …”
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Prevalence of and attitudes towards complementary therapy use for weight after breast cancer in Australia: a national survey by Carolyn Ee, Adele Elizabeth Cave, Dhevaksha Naidoo, John Boyages

“…The survey was emailed to members of the Breast Cancer Network Australia Survey and Review Group, the largest consumer advocacy group in Australia for people with breast cancer. …”
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Use of the patientMpower App With Home-Based Spirometry to Monitor the Symptoms and Impact of Fibrotic Lung Conditions: Longitudinal Observational Study by Edwards, Colin, Costello, Eamonn, Cassidy, Nicola, Vick, Bill, Russell, Anne-Marie

“…MethodsSelf-selecting participants enrolled in this community-based participatory research program through a patient advocacy group in their country: Irish Lung Fibrosis Association in Ireland and PF Warriors in the United States. …”
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Financial burden and quality of life among early‐onset colorectal cancer survivors: A qualitative analysis by Erica Blum‐Barnett, Sarah Madrid, Andrea Burnett‐Hartman, Shane R. Mueller, Carmit K. McMullen, Andrea Dwyer, Heather S. Feigelson

“…Methods We conducted a semi‐structured, stakeholder discussion among 14 early‐onset CRC survivors and one caregiver who were members of an advocacy group. The discussion focused on the financial and overall QOL impacts of CRC. …”
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Istore: a project on innovative statistical methodologies to improve rare diseases clinical trials in limited populations by Stefanie Schoenen, Johan Verbeeck, Lukas Koletzko, Isabella Brambilla, Mathieu Kuchenbuch, Maya Dirani, Georg Zimmermann, Holger Dette, Ralf-Dieter Hilgers, Geert Molenberghs, Rima Nabbout

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Potential causal factors of CFS/ME: a concise and systematic scoping review of factors researched by Ashley Elizabeth Muller, Kari Tveito, Inger Johanne Bakken, Signe A. Flottorp, Siri Mjaaland, Lillebeth Larun

“…Based on title/abstract review, two researchers independently sorted each study’s factors into nine main categories and 71 subordinate categories, using a system developed with input given during a 2018 ME conference, specialists and representatives from a ME patient advocacy group, and using BMJ Best Practice’s description of CFS/ME etiology. …”
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An innovative and collaborative partnership between patients with rare disease and industry-supported registries: the Global aHUS Registry by Len Woodward, Sally Johnson, Johan Vande Walle, Joran Beck, Christoph Gasteyger, Christoph Licht, Gema Ariceta, on behalf of the aHUS Registry SAB

“…A clear pathway was established for engagement between a patient advocacy group and an international research network. …”
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Living beyond placenta accreta spectrum: parent’s experience of the postnatal journey and recommendations for an integrated care pathway by Helena C. Bartels, Antje Horsch, Naomi Cooney, Donal J. Brennan, Joan G. Lalor

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