323.292.2002 connect@NCCPRE.org

General Information

Community and Patient Partnered Research Network (CPPRN)

CPPRN is a new project in Los Angeles County and New Orleans that seeks to improve behavioral health services for under-resourced communities. Our CPPRN is a part of PCORnet, an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI).  PCORnet will transform clinical research by engaging patients, care providers and health systems in partnerships that leverage health data to advance medical knowledge and improve health care. PCORnet is a national health data network will allow us to explore the questions about conditions, care and outcomes that matter most to patients and their families.

Link:  http://www.cpprn.org/our-study/

Autism Intervention Research Network on Behavioral Health (AIR-B)

AIR-B is a network of researchers seeking to advance evidence-based behavioral treatments for children with autism spectrum disorders, particularly those in underserved and minority communities. The network is composed of nine sites across the country: UCLA Center for Autism Research and Treatment (CART), University of Rochester Medical Center (URMC), University of Pennsylvania -Center of Mental Health Policy and Services Research (CMHSR), University of California, Davis (UC Davis)- Medical Investigation of Neurodevelopmental Disorder (MIND Institute), A.J. Drexel Autism Institute, Florida State University, Kennedy Krieger Institute, New York-Presbyterian Center for Autism and the Development Brain (CADB), and the University of Washington (UW). The network is conducting a number of studies to assess the efficacy and sustainability of community-based treatments and is working with members of the community to ensure that these treatments are addressing the challenges that children with autism spectrum disorders face in day-to-day life. In these efforts, we hope to make substantial advancements in the field, to empower educators, professionals, and parents with the tools they need, and most importantly to make a difference in the lives of children with ASD.

Link:    http://www.airbnetwork.org/

The Good News Radio Magazine

This weekly lived internet program is designed to promote equity in holistic health outcomes and research involvement by (1) teaching stress reduction techniques and coping skills (2) creating awareness of chronic disease reduction and prevention strategies in the community and (3) cultivating trust and interest in Community-Partnered Participatory Research.  We invite Community-based Pastors, Spiritual Leaders, Healthcare Professionals, Academic Researchers and Community Members to share valuable, personal, professional, health and research information. Our goal is to engage and enlist the listeners as advocates for equity in holistic health and research involvement in the community. This is a partnership with the Charles R. Drew University of Medicine & Science (CDU) Division of Community Engagement. A complete list and synopses of program topics (along with links to listen to the recordings) is available here: http://axis.cdrewu.edu/functions/community-engagement/good_news_radio. The Good News Radio Magazine is broadcast via Acceleratedradio.net on Wednesdays from 1-2pm.

Link:  http://axis.cdrewu.edu/functions/community-engagement/good_news_radio

Community-Based Participatory Research Approach to Colorectal Cancer Screening in Latino Populations

Hispanics have lower colorectal cancer screening rates than other populations and are diagnosed with cancer at later stages. In national-level data, there are a number of barriers which have been identified to contribute to lower screening rates. However, because Hispanic populations are not homogenous yet are often lumped together, it is not clear whether these same barriers operate in a particular Hispanic community in Northern Nevada which is an area with lower screening rates compared to the rest of the country. Therefore, this community is proposing to conduct a local needs assessment.

Link:  http://www.unr.edu/inbre/programs-and-projects/research-projects/devereux

CBPR in Alaska Native Communities Building Local Control and Self-Determination

Objectives: Past research conducted with Alaska Native communities involved researchers entering the community to gather data then leaving with that data never being returned or presented or the researchers to be heard from again. The communities were not made aware of the findings, how the data was used, or where the information was published. This method of research resulted in significant mistrust of researchers by tribal communities. This article will briefly describe the context and history of research with Alaska Native people; provide an overview of the complex approval process for research through two case studies; highlight the relevant principles of Community-Based Participatory Research (CBPR) when working with tribal communities; and our own experiences with the tribal approval process.

Methods: Using a case study format, the authors provide a guide to the complex approval process in working with tribal communities and the relevance of Community-Based Participatory Research (CBPR). This is based on their experiences with the approval processes in a dissertation study and a community-based Elder Needs Assessment project.

Results and Conclusions: Drawing from their personal experiences and understanding of the tribal approval process, the authors discuss the benefits and challenges associated with conducting research with tribal communities in rural Alaska. They also provide recommendations for future researchers on how to work effectively with tribal communities, from entry into the community through dissemination and publication of information.

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2016 CBR Fellows

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Healthy African American Families (HAAF) Partnerships 2017

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