173 Delving into Sociocultural Influences in Access to Care in Black Women and Latinas with Uterine Fibroids by Minerva Orellana, Joyce E. Balls-Berry, Sateria Venable, Elizabeth A. Stewart, Felicity Enders

“…METHODS/STUDY POPULATION: We have taken a community engaged research approach and partnered with the Fibroid Foundation, a patient UF advocacy group. Following IRB approval, the study was advertised on the Fibroid Foundation’s various social media platforms, such as Instagram. …”
Get full text

Patient Pathway to Diagnosis of Myelin Oligodendrocyte Glycoprotein Antibody-Associated Disease (MOGAD): Findings from a Multinational Survey of 204 Patients by Jonathan D. Santoro, Jennifer Gould, Zoya Panahloo, Ella Thompson, Julia Lefelar, Jacqueline Palace

“…Methods A 23-question online survey (including multiple-choice and free-text responses) covering symptom history, healthcare interactions and impact of diagnosis was emailed to people living with MOGAD by The MOG Project patient advocacy group. People living with MOGAD could share the survey with their caregivers. …”
Get full text

Public awareness and perceptions of ocean plastic pollution and support for solutions in the United States by Britta R. Baechler, Hannah De Frond, Hannah De Frond, Lisa Dropkin, George H. Leonard, Leonardo Proano, Nicholas J. Mallos

“…-based nonprofit environmental advocacy group working to protect the ocean from today’s greatest challenges. …”
Get full text

Key stakeholder perspectives on the barriers and solutions to pharmacy practice towards complementary medicines: an Australian experience by Carolina Oi Lam Ung, Joanna Harnett, Hao Hu

“…Methods Semi-structured key informant interviews were conducted with 2 practicing pharmacists, 1 pharmacy owner, 1 key representative of a pharmacist professional organization, 1 key representative of a consumer advocacy group, 1 key representative of a medical professional organization, 1 key representative from a complementary medicine practitioner professional organization, 1 leader within a pharmacy school, 2 senior staff from a regulatory authority, and 1 key representative of the complementary medicine industry in Australia. …”
Get full text

Why is appropriate healthcare inaccessible for many European breast cancer patients? – The EBCC 12 manifesto by Fatima Cardoso, Fiona MacNeill, Frederique Penault-Llorca, Alexandru Eniu, Francesco Sardanelli, Elizabeth Bergsten Nordström, Philip Poortmans

“…As patient involvement is indispensable in driving changes to clinical practice, Europa Donna the European patient advocacy group was closely involved in the 12th manifesto.Reimbursement policies have rarely evolved with advances in breast cancer care such as outpatient (ambulatory) care rather than inpatient admission, use of oral or subcutaneous anti-cancer drugs rather than day-hospital intravenous administration, oncoplastic surgery techniques to minimize mastectomy rates, breast reconstructive surgery, risk-reducing surgery for BRCA mutation carriers, or use of hypo-fractionated breast radiation therapy. …”
Get full text

Social network-based group intervention to promote HIV prevention in Uganda: study protocol for a cluster randomized controlled trial of Game Changers by Glenn J. Wagner, Laura M. Bogart, Harold D. Green, Erik D. Storholm, David J. Klein, Ryan K. McBain, Richard Serunkuuma, Kuraish Mubiru, Joseph K. B. Matovu, Stephen Okoboi

Get full text

Making the invisible visible: results of a community-led health survey following PFAS contamination of drinking water in Merrimack, New Hampshire by Bindu Panikkar, Benjamin Lemmond, Laurene Allen, Carol DiPirro, Shaina Kasper

“…This research examines the local response to PFAS contamination of the public water system and well water in Merrimack and the results from the health survey administered by a local advocacy group, Merrimack Citizens for Clean Water (MCFCW). …”
Get full text

Framing clean energy campaigns to promote civic engagement among parents by Nichole Hanus, Gabrielle Wong-Parodi, Lisa Hoyos, Molly Rauch

“…Both studies were conducted in Michigan, Florida, and California, as these states have sizable advocacy group membership, divergent energy profiles, and strategic importance to the climate movement. …”
Get full text

Mediators and moderators of the effect of the game changers for cervical cancer prevention intervention on cervical cancer screening among previously unscreened social network memb... by Joseph KB Matovu, Glenn J. Wagner, Margrethe Juncker, Eve Namisango, Kathryn Bouskill, Sylvia Nakami, Jolly Beyeza-Kashesya, Emmanuel Luyirika, Rhoda K. Wanyenze

“…Abstract Introduction Cervical cancer (CC) rates are high in Uganda, yet CC screening rates are very low. Our peer advocacy group intervention, Game Changers for Cervical Cancer Prevention (GC-CCP), was shown to increase CC screening uptake among social network members. …”
Get full text

Evidence-Based Consensus Recommendations for the Evolving Treatment of Patients with High-Risk and Advanced Cutaneous Squamous Cell Carcinoma by Guilherme Rabinowits, Michael R. Migden, Todd E. Schlesinger, Robert L. Ferris, Morganna Freeman, Valerie Guild, Shlomo Koyfman, Anna C. Pavlick, Neil Swanson, Gregory T. Wolf, Scott M. Dinehart

“…The steering committee included five dermatologists, three medical oncologists, two head and neck surgeons, one radiation oncologist, and a patient advocacy group representative. The steering committee aligned on the following clinical topics: diagnosis and identification of patients considered not candidates for surgery; staging systems and risk stratification in cutaneous squamous cell carcinoma; the role of radiation therapy, surgery, and systemic therapy in the management of advanced disease, with a focus on immunotherapy; referral patterns; survivorship care; and inclusion of the patient’s perspective. …”
Get full text

Uveal Melanoma: A European Network to Face the Many Challenges of a Rare Cancer by Sophie Piperno-Neumann, Jose Maria Piulats, Matthias Goebeler, Iain Galloway, Iwona Lugowska, Jürgen C. Becker, Pia Vihinen, Joachim Van Calster, Theodora Hadjistilianou, Rui Proença, Jose Maria Caminal, Muriel Rogasik, Jean-Yves Blay, Ellen Kapiteijn

Get full text

Children with an Anorectal Malformation Going to Primary School: The Parent’s Perspective by Cunera M. C. de Beaufort, Joep P. M. Derikx, Marijke E. Voskeuil, Josef Atay, Caroline F. Kuijper, Sjoerd A. de Beer, Justin R. de Jong, Arnout de Bos, Svenja Vennink, L. W. Ernest van Heurn, Ramon R. Gorter

“…Methods: This survey was developed in collaboration with the national patient advocacy group (PAG). Recruitment for participation was conducted by the PAG (email listing and social media) and one expertise center for ARM. …”
Get full text

An update on the long-term outcomes of prenatal dexamethasone treatment in congenital adrenal hyperplasia by Annelies van’t Westeinde, Leif Karlsson, Valeria Messina, Lena Wallensteen, Manuela Brösamle, Giorgio Dal Maso, Alessandro Lazzerini, Jette Kristensen, Diana Kwast, Lea Tschaidse, Matthias K Auer, Hanna F Nowotny, Luca Persani, Nicole Reisch, Svetlana Lajic

Get full text

Effect of Inter-Reader Variability on Diffusion-Weighted MRI Apparent Diffusion Coefficient Measurements and Prediction of Pathologic Complete Response for Breast Cancer by Nu N. Le, Wen Li, Natsuko Onishi, David C. Newitt, Jessica E. Gibbs, Lisa J. Wilmes, John Kornak, Savannah C. Partridge, Barbara LeStage, Elissa R. Price, Bonnie N. Joe, Laura J. Esserman, Nola M. Hylton

Get full text

Views of Women and Health Professionals on mHealth Lifestyle Interventions in Pregnancy: A Qualitative Investigation by Willcox, Jane C, van der Pligt, Paige, Ball, Kylie, Wilkinson, Shelley A, Lappas, Martha, McCarthy, Elizabeth A, Campbell, Karen J

“…The absence of a key pregnancy or women’s advocacy group, lack of health funds for technologies, and the perceived inability of maternity hospitals to embrace technology were seen to be key barriers to provision. …”
Get full text

Preferences for breast cancer prevention among women with a BRCA1 or BRCA2 mutation by Carol A. Mansfield, Kelly A. Metcalfe, Carrie Snyder, Geoffrey J. Lindeman, Joshua Posner, Sue Friedman, Kathleen Cuningham Foundation Consortium for Research into Familial Breast Cancer, Henry T. Lynch, Steven A. Narod, D. Gareth Evans, Alexander Liede

“…Methods Women with a BRCA1/2 mutation and no previous cancer diagnosis were recruited from the US, Canada, the UK, Australia, and from a national advocacy group. Using an online survey, we asked about cancer-risk reduction preferences including for one of two hypothetical medicines, randomly assigned, and women’s recommendations for a hypothetical woman (Susan, either a 25- or 36-year-old). …”
Get full text

Using Information Technology and Social Networking for Recruitment of Research Participants: Experience From an Exploratory Study of Pediatric Klinefelter Syndrome by Close, Sharron, Smaldone, Arlene, Fennoy, Ilene, Reame, Nancy, Grey, Margaret

“…With these approaches, 5 (12%) were recruited from the national Klinefelter syndrome advocacy group, 8 (19%) from local and teleconference support groups, 10 (23%) from a Web-based research recruitment program, and 16 (37%) from the university-affiliated recruitment website. …”
Get full text

An exploratory qualitative study of the prevention of road traffic collisions and neurotrauma in India: perspectives from key informants in an Indian industrial city (Visakhapatnam... by Santhani M Selveindran, Gurusinghe D. N. Samarutilake, K. Madhu Narayana Rao, Jogi V. Pattisapu, Christine Hill, Angelos G. Kolias, Rajesh Pathi, Peter J. A. Hutchinson, M. V. Vijaya Sekhar

“…Participants were from one of the following categories: commissioning stakeholders; service providers; community or local patient group/advocacy group representatives. Transcripts from these interviews were analysed qualitatively using the Framework Method. …”
Get full text

The Cure VCP Scientific Conference 2021: Molecular and clinical insights into neurodegeneration and myopathy linked to multisystem proteinopathy-1 (MSP-1) by Michelle A. Johnson, Jacob A. Klickstein, Richa Khanna, Yunzi Gou, Malavika Raman

“…This conference, planned and organized by the nonprofit patient advocacy group Cure VCP Disease, Inc. (https://www.curevcp.org), was the first VCP focused meeting since the 215th ENMC International Workshop VCP-related multi-system proteinopathy in 2016 (Evangelista et al., 2016). …”
Get full text

Characterizing a rare neurogenetic disease, SLC13A5 citrate transporter disorder, utilizing clinical data in a cloud-based medical record collection system by Emily M. Spelbrink, Tanya L. Brown, Elise Brimble, Kirsten A. Blanco, Kirsten A. Blanco, Kimberly L. Nye, Brenda E. Porter

“…Further, utilizing cloud-based medical records allows industry, academic, and patient advocacy group collaboration to provide preliminary characterization of a rare genetic disorder. …”
Get full text