Assessment of Stakeholder Engagement in a Down Syndrome Research Study

Assessment of Stakeholder Engagement in a Down Syndrome Research Study

There is growing recognition of the importance of engaging patients early in the design of research studies. For studies involving patients with intellectual and cognitive disabilities, researchers may consider engaging with family caregivers, health professionals, community advocates, and/or subjec...

Full description

Bibliographic Details
Main Authors:	Jeanhee Chung, Ashwini Sarathy, Yichuan Grace Hsieh, Greg Estey, Amy Torres, Vasiliki Patsiogiannis, Karen Donelan, Brian G. Skotko
Format:	Article
Language:	English
Published:	Advocate Aurora Health 2021-01-01
Series:	Journal of Patient-Centered Research and Reviews
Subjects:	stakeholder engagement patient engagement in research scale peirs participatory research down syndrome intellectual disability
Online Access:	https://institutionalrepository.aah.org/cgi/viewcontent.cgi?article=1777&context=jpcrr

Similar Items

Stakeholder-engaged research: a multidisciplinary historical analysis
Published: (2024-07-01)

A lung cancer research agenda that reflects the diverse perspectives of community stakeholders: process and outcomes of the SEED method
by: Carlin L. Rafie, et al.
Published: (2019-01-01)

Researchers, patients, and other stakeholders’ perspectives on challenges to and strategies for engagement
by: Andrea Heckert, et al.
Published: (2020-10-01)

A review of reported stakeholder engagement in early-stage translational research
by: Thomas W. Concannon, et al.
Published: (2025-01-01)

Stakeholder engagement infrastructure to support multicenter research networks: Advances from the clinical research networks participating in PCORnet
by: Elizabeth L. Cope, et al.
Published: (2023-01-01)

Academic Research on Signage: Research Directions to Add Value for Stakeholders
by: Charles Taylor
Published: (2022-06-01)

Patient Engagement in Research Scale (PEIRS-22): Danish translation, applicability, and user experiences
by: Mille Guldager Christiansen, et al.
Published: (2023-12-01)

Fostering citizen‐engaged HIV implementation science
by: Benedict Xin Hao Tan, et al.
Published: (2024-07-01)

Engaging stakeholders: lessons from the use of participatory tools for improving maternal and child care health services
by: Elizabeth Ekirapa-Kiracho, et al.
Published: (2017-12-01)

“Our lab is the community”: Defining essential supporting infrastructure in engagement research
by: Donald E. Nease, et al.
Published: (2018-08-01)

So much more than a “pair of brown shoes”: Triumphs of patient and other stakeholder engagement in patient-centered outcomes research
by: Amanda Brodt, M.P.P., et al.
Published: (2015-04-01)

“Research Jam”: Engaging patients and other stakeholders through human-centered design to improve translational research
by: Sarah E. Wiehe, et al.
Published: (2023-01-01)

Conducting clinical trials in persons with Down syndrome: summary from the NIH INCLUDE Down syndrome clinical trials readiness working group
by: Nicole T. Baumer, et al.
Published: (2022-03-01)

Applying systems approaches to stakeholder and community engagement and knowledge mobilisation in youth mental health system modelling
by: Louise Freebairn, et al.
Published: (2022-04-01)

Enhancing translational researchers’ ability to collaborate with community stakeholders: Lessons from the Community Engagement Studio
by: Yvonne A. Joosten, et al.
Published: (2018-08-01)

Storytelling training to promote stakeholder engagement in research dissemination
by: Hae-Ra Han, et al.
Published: (2022-01-01)

Editorial: How can We Co-Create Solutions in Health Promotion With Users and Stakeholders?
by: Christiane Stock, et al.
Published: (2021-12-01)

Digital and virtual strategies to advance community stakeholder engagement in research during COVID-19 pandemic
by: Samuel Byiringiro, et al.
Published: (2022-01-01)

Extension Stakeholder Engagement: An Exploration of Two Cases Exemplifying 21st Century Adaptions
by: Charles French, et al.
Published: (2015-06-01)

Community Conversations: Stakeholder-Identified Research Priorities to Foster Community Participation for Individuals With Intellectual and Developmental Disability
by: Roxanna M. Bendixen, et al.
Published: (2022-06-01)

Stakeholder engagement in European brain research: Experiences of the Lifebrain consortium
by: Isabelle Budin‐Ljøsne, et al.
Published: (2023-06-01)

Stakeholder engagement in eight comparative effectiveness trials in African Americans and Latinos with asthma
by: Tiffany Dy, et al.
Published: (2022-11-01)

A new era for science-industry research collaboration – a view towards the future
by: Matthew R. Baker, et al.
Published: (2023-11-01)

Participatory methods to support team science development for predictive analytics in health
by: Armen C. Arevian, et al.
Published: (2018-06-01)

Driving key partner engagement by integrating community-engaged principles into a stakeholder analysis: A qualitative study
by: Casey Allen, et al.
Published: (2024-01-01)

Operationalizing stakeholder engagement for gene drive research in malaria elimination in Africa—translating guidance into practice
by: Lea Pare Toe, et al.
Published: (2022-07-01)

Aligning community-engaged research competencies with online training resources across the Clinical and Translational Science Award Consortium
by: Rebecca J. Piasecki, et al.
Published: (2021-01-01)

An Overview of Stakeholders, Methods, Topics, and Challenges in Participatory Approaches Used in the Development of Medical Devices: A Scoping Review
by: Kas Woudstra, et al.
Published: (2023-12-01)

Co-creation of a gender responsive TB intervention in Nigeria: a researcher-led collaborative study
by: Chukwuebuka Ugwu, et al.
Published: (2025-01-01)

Engaging stakeholders to level up COPD care in LMICs: lessons learned from the “Breathe Well” programme in Brazil, China, Georgia, and North Macedonia
by: Genevie Fernandes, et al.
Published: (2024-01-01)

The ACTIV-6 Stakeholder Advisory Committee: a model for virtual engagement in decentralized clinical trials
by: Megan E. Hamm, et al.
Published: (2023-01-01)

Evaluation of a stakeholder advisory board for an adolescent mental health randomized clinical trial
by: Alicia M. Hoke, et al.
Published: (2023-03-01)

Stakeholder-engaged research is necessary across the criminal-legal spectrum
by: Alysse G. Wurcel, et al.
Published: (2023-01-01)

Effective stakeholder engagement: design and implementation of a clinical trial (SWOG S1415CD) to improve cancer care
by: Sarah Barger, et al.
Published: (2019-06-01)

Building a children's health and environment research agenda in Alberta, Canada: A multi-stakeholder engagement process
by: Osnat Wine, et al.
Published: (2019-01-01)

A stakeholder engagement method navigator webtool for clinical and translational science
by: Bethany M. Kwan, et al.
Published: (2021-01-01)

Building Equitable Community-Academic Partnerships for Opioid Recovery Research: Lessons Learned from Stakeholder Engagement With Peer and Provider Organizations
by: Jon N. Gilgoff, et al.
Published: (2022-11-01)

Trauma‐informed patient and public‐engaged research: Development and evaluation of an online training programme
by: Amber M. Gum, et al.
Published: (2023-02-01)

Researcher perspectives on embedding community stakeholders in T1–T2 research: A potential new model for full-spectrum translational research
by: Sheba George, et al.
Published: (2019-06-01)

Community stakeholder perspectives for empowering EJ initiatives through Public Participation Geographic Information Systems (PPGIS)
by: Jacelyn Rice-Boayue, et al.
Published: (2025-01-01)