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. …”
Get full text

Meeting report: South African Medical Research Council Standard of Care in Clinical Research in Low- And Middle-Income Settings Summit, November 2017 by Maurine D. Miner, Linda-Gail Bekker, Tamara Kredo, Niresh Bhagwandin, Lawrence Corey, Glenda E. Gray

“…Policymakers, regulators, ethicists, experts in law, researchers, representatives of advocacy groups, and the HIV Vaccine Trials Network (HVTN) presented a framework within which SoC principles could be articulated. …”
Get full text

Health Service Development and Planning for Autism in Egypt by H. Hasan, M. Elhamshary

“…This effort would be intended for policymakers, service providers, community organizations & advocacy groups to better understand & address the needs of children with autism in Egypt. …”
Get full text

A comparative content analysis of newspaper coverage about extreme risk protection order policies in passing and non-passing US states by Amanda J. Aubel, Rocco Pallin, Christopher E. Knoepke, Garen J. Wintemute, Nicole Kravitz-Wirtz

“…Results Compared to newspaper coverage of non-passing states, news articles about ERPOs in passing states more often used only official policy names for ERPOs (38% vs. 23%, p = .03), used less restrictive language such as “prevent” to describe the process of suspending firearm access (15% vs. 3%, p < .01), mentioned gun violence prevention advocacy groups (41% vs. 28%, p = .08), and referenced research on ERPOs (17% vs. 7%, p = .03). …”
Get full text

Self-Monitoring Physical Activity, Diet, and Weight Among Adults Who Are Legally Blind: Exploratory Investigation by Kamilla Miller, Gerald J Jerome

“…MethodsParticipants (≥18 years of age) who self-identified as being legally blind were recruited using email announcements in low vision advocacy groups. They completed an interviewer-administered survey on the telephone and an in-person visit for standardized assessment of height and weight. …”
Get full text

What Twitter teaches us about patient-provider communication on pain. by Yasmin M Kloth, Kenneth M Deutsch, Katy A Danielson, Julie Strack, Catherine Law

“…By identifying how information is spread by and between these audiences, organizations such as patient advocacy groups may be better poised to develop and share materials that facilitate online communication between HCPs and pain patients, with an end goal of improving a shared decision-making process around pain management. …”
Get full text

A protocol for a single-arm interventional study assessing the effects of a home-based joystick-operated ride-on-toy navigation training programme to improve affected upper extremi... by Kathleen M Friel, Vaishnavi Shahane, Patrick Kumavor, Kristin Morgan, Sudha Madhav Srinivasan

“…Results from this study will be disseminated through peer-reviewed manuscripts in scientific journals in the field, through national and international conferences, and through presentations to parent advocacy groups and other support organisations associated with CP.Trial registration number NCT05559320.…”
Get full text

Self-reported dietary adherence, disease-specific symptoms, and quality of life are associated with healthcare provider follow-up in celiac disease by Jacob J. Hughey, Bonnie K. Ray, Anne R. Lee, Kristin N. Voorhees, Ciaran P. Kelly, Detlef Schuppan

“…Many CeD patients also participate in patient advocacy groups (PAGs) for education and support. Previous work found that follow-up of CeD patients is highly variable. …”
Get full text

How can we get more people with long-term health conditions involved in parkrun? A qualitative study evaluating parkrun’s PROVE project by Helen Quirk, Steve Haake

“…Success of the PROVE project was believed to be dependent on being realistic about the potential to bring about change, challenging people’s perceptions of parkrun and engaging with key stakeholders and advocacy groups. Challenges for parkrun were believed to be around communication, demonstrating impact and the project’s dependence on volunteers for delivery. …”
Get full text

Self-management strategies amongst Australian women with endometriosis: a national online survey by Mike Armour, Justin Sinclair, K. Jane Chalmers, Caroline A. Smith

“…Methods A cross-sectional online survey was distributed via social media using endometriosis support and advocacy groups in Australia between October and December 2017. …”
Get full text

Barriers and facilitators to the implementation of guidelines in rare diseases: a systematic review by Matthew Gittus, Jiehan Chong, Anthea Sutton, Albert C. M. Ong, James Fotheringham

“…There was a paucity of studies reporting influential people, patient advocacy groups or opinion leaders, or organisational factors influencing implementation. …”
Get full text

Vrouw in de bouw. De eerste vrouwelijke afgestudeerde architecten in Nederland by Erica Smeets-Klokgieters

“…Membership of women’s advocacy groups and professional associations provided those trailblazing female architects with useful networks and contributed to their professionalization. …”
Get full text

An Environmental and Economic Systems Analysis of Land Use Decisions in the Massachusetts Cranberry Industry by Jaffe, Caroline Adair

“…Given the scale of the cranberry industry and the amount of ecologically valuable yet vulnerable land at stake, farmers, local governments, and environmental advocacy groups alike need higher quality information and tools to inform land use decisions. …”
Get full text

Reading the tea leaves : the Tea Party movement, the conservative establishment and the collapse of climate change legislation by Dineen, Kathryn P. (Kathryn Patricia)

Get full text

Strengthening informal supply chains : the case of recycling in Bandung, Indonesia by Tuori, Michael A. (Michael Aaron)

Get full text

Newspaper coverage of food insecurity in UK, 2016–2019: a multi-method analysis by Yau, A, Singh-Lalli, H, Forde, H, Keeble, M, White, M, Adams, J

“…Articles often contained views from advocacy groups and charities, who appeared to play an important role in maintaining news interest in food insecurity. …”

U-Flourish university students well-being and academic success longitudinal study: a study protocol by Goodday, S, Rivera, D, Foran, H, King, N, Milavonic, M, Keown-Stoneman, C, Horrocks, J, Tetzlaff, E, Bowie, C, Pickett, W, Harkness, K, Saunders, K, Cunningham, S, McNevin, S, Duffy, A

“…Findings will be disseminated through international and national peer-reviewed scientific articles and other channels including student-driven support and advocacy groups, newsletters, and social media.</p>…”

Ethnic differences in hepatocellular carcinoma prevalence and therapeutic outcomes by Vivek Chavda, Kelsee K. Zajac, Jenna Lynn Gunn, Pankti Balar, Avinash Khadela, Dixa Vaghela, Shruti Soni, Charles R. Ashby Jr., Amit K. Tiwari

“…Standardizing the assessment approach and method will enable comparison and improvement of liver cancer research through collaboration between researchers, healthcare providers, and advocacy groups. In this review, we will focus on discussing epidemiological factors that result in deviations and changes in treatment approaches for HCC.…”
Get full text

Report of the first international workshop on onchocerciasis-associated epilepsy by Robert Colebunders, Michel Mandro, Alfred K. Njamnshi, Michel Boussinesq, An Hotterbeekx, Joseph Kamgno, Sarah O’Neill, Adrian Hopkins, Patrick Suykerbuyk, Maria-Gloria Basáñez, Rory J. Post, Belén Pedrique, Pierre-Marie Preux, Wilma A. Stolk, Thomas B. Nutman, Richard Idro

“…An OAE Alliance was created to increase awareness about OAE and its public health importance, stimulate research and disseminate research findings, and create partnerships between OAE researchers, communities, advocacy groups, ministries of health, non-governmental organisations, the pharmaceutical industry and funding organizations. …”
Get full text

Managing the link and strengthening transition from child to adult mental health Care in Europe (MILESTONE): background, rationale and methodology by H. Tuomainen, U. Schulze, J. Warwick, M. Paul, G.C. Dieleman, T. Franić, J. Madan, A. Maras, F. McNicholas, D. Purper-Ouakil, P. Santosh, G. Signorini, C. Street, S. Tremmery, F.C. Verhulst, D. Wolke, S. P. Singh, for the MILESTONE consortium

“…Methods Data will be collected via systematic literature reviews, pan-European surveys, and focus groups with service providers, users and carers, and members of youth advocacy and mental health advocacy groups. A prospective cohort study will be conducted with a nested cluster randomised controlled trial in eight European Union (EU) countries (Belgium, Croatia, France, Germany, Ireland, Italy, Netherlands, UK) involving over 1000 CAMHS users, their carers, and clinicians. …”
Get full text