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Cancer Causes & Control, Volume 34, supplement issue 1, December 2023

20 Years of the Cancer Prevention and Control Research Network (CPCRN): Past, Present, and Future

Sub-Theme 2: Capacity-Building

Cancer Causes & Control, Volume 34, supplement issue 1, December 2023

20 Years of the Cancer Prevention and Control Research Network (CPCRN): Past, Present, and Future

Sub-Theme 3: Partnership Engagement

Cancer Causes & Control, Volume 34, supplement issue 1, December 2023

20 Years of the Cancer Prevention and Control Research Network (CPCRN): Past, Present, and Future

Sub-Theme 4: Rural Cancer Prevention and Control

Cancer Causes & Control, Volume 34, supplement issue 1, December 2023

20 Years of the Cancer Prevention and Control Research Network (CPCRN): Past, Present, and Future

Sub-Theme 5: Future Cancer Needs and Priorities

Cancer Causes & Control, Volume 34, supplement issue 1, December 2023

20 Years of the Cancer Prevention and Control Research Network (CPCRN): Past, Present, and Future

Introductory Article

Twenty years of collaborative research to enhance community practice for cancer prevention and control
Arica White, Susan A. Sabatino, Mary C. White, Cynthia Vinson, David A. Chambers & Lisa C. Richardson

Closing Article

The special sauce of the Cancer Prevention and Control Research Network: 20 years of lessons learned in developing the evidence base, building community capacity, and translating research into practice
Stephanie B. Wheeler, Rebecca J. Lee, Alexa L. Young, Adam Dodd, Charlotte Ellis, Bryan J. Weiner, Kurt M. Ribisl, Prajakta Adsul, Sarah A. Birken, María E. Fernández, Peggy A. Hannon, James R. Hébert, Linda K. Ko, Aaron Seaman, Thuy Vu, Heather M. Brandt & Rebecca S. Williams

Front. Health.Serv (Aug 2023)

Abstract

INTRODUCTION: Implementation is influenced by factors beyond individual clinical settings. Nevertheless, implementation research often focuses on factors related to individual providers and practices, potentially due to limitations of available frameworks. Extant frameworks do not adequately capture the myriad organizational influences on implementation. Organization theories capture diverse organizational influences but remain underused in implementation science. To advance their use among implementation scientists, we distilled 70 constructs from nine organization theories identified in our previous work into theoretical domains in the Organization Theory for Implementation Science (OTIS) framework.

METHODS: The process of distilling organization theory constructs into domains involved concept mapping and iterative consensus-building. First, we recruited organization and implementation scientists to participate in an online concept mapping exercise in which they sorted organization theory constructs into domains representing similar theoretical concepts. Multidimensional scaling and hierarchical cluster analyses were used to produce visual representations (clusters) of the relationships among constructs in concept maps. Second, to interpret concept maps, we engaged members of the Cancer Prevention and Control Research Network (CPCRN) OTIS workgroup in consensus-building discussions.

RESULTS:  Twenty-four experts participated in concept mapping. Based on resulting construct groupings' coherence, OTIS workgroup members selected the 10-cluster solution (from options of 7-13 clusters) and then reorganized clusters in consensus-building discussions to increase coherence. This process yielded six final OTIS domains: organizational characteristics (e.g., size; age); governance and operations (e.g., organizational and social subsystems); tasks and processes (e.g., technology cycles; excess capacity); knowledge and learning (e.g., tacit knowledge; sense making); characteristics of a population of organizations (e.g., isomorphism; selection pressure); and interorganizational relationships (e.g., dominance; interdependence).

DISCUSSION:   Organizational influences on implementation are poorly understood, in part due to the limitations of extant frameworks. To improve understanding of organizational influences on implementation, we distilled 70 constructs from nine organization theories into six domains. Applications of the OTIS framework will enhance understanding of organizational influences on implementation, promote theory-driven strategies for organizational change, improve understanding of mechanisms underlying relationships between OTIS constructs and implementation, and allow for framework refinement. Next steps include testing the OTIS framework in implementation research and adapting it for use among policymakers and practitioners.

KEYWORDS: organization theory, implementation, determinant framework, concept mapping, consensus-building

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Cancer (Jul 2023)

Abstract

BACKGROUND: Social isolation and connectedness are social determinants of health that have demonstrated effects on cancer-related outcomes. These constructs have been systematically evaluated among pediatric and older adult cancer populations. In this review, the authors evaluated the prevalence, correlates, and psychosocial implications of social isolation and connectedness among young adult (YA) cancer survivors aged 18-39 years.

METHODS: Peer-reviewed articles published in English before June 2021 were identified from database searches and included articles' reference lists according to PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines. Included articles described studies that assessed social isolation and/or connectedness among YA cancer survivors.

RESULTS: In total, 5094 unique records were identified; 4143 were excluded after title/abstract screening, and 907 were excluded after full-text review. Forty-four articles were included. Few studies used validated measures or directly assessed social isolation or connectedness. Social isolation was similarly prevalent among YAs and older cancer survivors and noncancer populations. Demographic, clinical, and behavioral risk and protective factors for social isolation were identified. Social isolation was related to worse psychological well-being, whereas social connectedness was often, but not always, related to better psychological well-being.

CONCLUSIONS: This growing literature underscores the relevance of social isolation and connectedness as important health determinants among YA cancer survivors. The identified risk and protective factors can identify YAs who especially may benefit from screening for social isolation. Future studies are needed that directly, reliably, and validly evaluate social isolation and connectedness to inform the development of interventions to decrease isolation and increase connectedness.

KEYWORDS: cancer survivorship; social connectedness; social isolation; systematic review; young adults.

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Cancer Causes & Control (Jul 2023)

Abstract

PURPOSE: To apply principles of group model building (GMB), a participatory systems science approach, to identify barriers and opportunities for collective impact around nutrition programming to reduce cancer risk for immigrant communities in an urban environment.

METHODS: We convened four in-person workshops applying GMB with nine community partners to generate causal loop diagrams (CLDs)-a visual representation of hypothesized causal relationships between variables and feedback structures within a system. GMB workshops prompted participants to collaboratively identify programmatic goals and challenges related to (1) community gardening, (2) nutrition education, (3) food assistance programs, and (4) community-supported agriculture. Participants then attended a plenary session to integrate findings from all workshops and identify cross-cutting ideas for collective action.

RESULTS Several multilevel barriers to nutrition programming emerged: (1) food policies center the diets and practices of White Americans and inhibit culturally tailored food guidelines and funding for culturally appropriate nutrition education; (2) the lack of culturally tailored nutrition education in communities is a missed opportunity for fostering pride in immigrant food culture and sustainment of traditional food practices; and (3) the limited availability of traditional ethnic produce in food assistance programs serving historically marginalized immigrant communities increases food waste and worsens food insecurity.

CONCLUSION: Emergent themes coalesced around the need to embed cultural tailoring into all levels of the food system, while also considering other characteristics of communities being reached (e.g., language needs). These efforts require coordinated actions related to food policy and advocacy, to better institutionalize these practices within the nutrition space.

KEYWORDS: Cancer disparities; Community engagement; Cultural adaptation; Food system; Immigrant communities; Systems science.

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Journal of Community Health (Jul 2023)

Abstract

To describe the reach, implementation, and sustainability of COVID-19 vaccination programs delivered by social service community organizations. Five academic institutions in the Chicagoland CEAL (Community Engagement Alliance) program partnered with 17 community organizations from September 2021—April 2022. Interviews, community organizations program implementation tracking documents, and health department vaccination data were used to conduct the evaluation. A total of 269 events were held and 5,432 COVID-19 vaccines delivered from May 2021–April 2022. Strategies that worked best included offering vaccinations in community settings with flexible and reliable hours; pairing vaccinations with ongoing social services; giving community organizations flexibility to adjust programs; offering incentives; and vaccinating staff first. These strategies and partnership structures supported vaccine uptake, community organization alignment with their missions and communities’ needs, and trust. Community organizations delivering social services are local community experts and trusted messengers. Pairing social service delivery with COVID-19 vaccination built individual and community agency. Giving COs creative control over program implementation enhanced trust and vaccine delivery. When given appropriate resources and control, community organizations can quickly deliver urgently needed health services in a public health crisis.

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Implementation Science Communications (Jul 2023)

Abstract

BACKGROUND: As the focus has grown in recent years on both engaged research and dissemination and implementation (D&I) research, so too has federal funding to support these areas. The purpose of this analysis is to provide an overall perspective about the range of practices and approaches being used to engage partners in D&I research, with special attention to disparities-relevant research, and to identify gaps and opportunities in research funded by the US National Institutes of Health (NIH) in this space.

METHODS: This analysis examined a portfolio of active D&I research grants funded in fiscal years 2020 and 2021 across the NIH. Grant applications were deductively coded and summary statistics were calculated. Cross-tabulations were used to identify trends by engagement and disparities foci.

RESULTS There were 103 grants included in the portfolio, of which 87% contained some form of community or partner engagement, and 50% of engaged grants were relevant to health disparities. Engagement was planned across the research continuum with each study engaging on average 2.5 different partner types. Consultation was the most common level of engagement (56%) while partnership was the least common (3%). On average, each study used 2.2 engagement strategies. Only 16% of grants indicated formally measuring engagement. Compared to non-disparities studies, disparities-relevant studies were about twice as likely to engage partners at the higher levels of partnership or collaboration (19% vs. 11%) and were also more likely to be conducted in community settings (26% vs. 5%).

CONCLUSIONS: Based on this portfolio analysis, D&I research appears to regularly integrate engagement approaches and strategies, though opportunities to deepen engagement and diversify who is engaged remain. This manuscript outlines several gaps in the portfolio and describes opportunities for increasing engagement to improve the quality of D&I research and application to advancing health equity. In addition, opportunities for leveraging the consistent and systematic application of engagement approaches and strategies to advance the science of engagement are discussed.

KEYWORDS: Community engagement; Dissemination and implementation; Health disparities; Health equity; Partner engagement.

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PEC Innovation (July 2023 online)

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JMIR Formative Research (Jul 2023)

Abstract

BACKGROUND: Research clearly demonstrates social determinants of health (SDOH) impact health outcomes. Provider consideration of patient SDOH in prevention and treatment planning is critical for improved health care quality and health equity. Despite awareness of the connections between SDOH and improved population health, research demonstrates few providers document patient SDOH.

OBJECTIVE: This qualitative study aimed to better understand the barriers and facilitators of SDOH assessment, documentation, and referral in different health care settings and roles.

METHODS: Individual semistructured interviews were conducted with practicing health care providers in South Carolina between August 25, 2022, and September 2, 2022. Participants were recruited via community partners’ web-based newsletters or listservs using a purposive sampling design. An interview guide with 19 questions was used to explore the following research question: How do SDOH impact patient health and what are the facilitators and barriers experienced by multidisciplinary health care providers assessing and documenting patient SDOH?

RESULTS: Participants (N=5) included a neonatal intensive care unit registered nurse, a nurse practitioner, a certified nurse midwife, a family and preventive medicine physician, and a counselor (licensed clinical social worker) with careers spanning 12 to 32 years. Participant responses are presented according to the following 5 themes: participants’ understanding of SDOH for the patient population, assessment and documentation practices, referrals to other providers and community-based resources, barriers and facilitators of SDOH assessment and documentation, and SDOH assessment and documentation training preferences. Overall, participants were aware of the importance of including patient SDOH in assessment and intervention but noted a variety of institutional and interpersonal barriers to assessment and documentation, including time constraints, perceptions of stigma around discussion of SDOH, and limited referral protocols.

CONCLUSIONS: Incentivizing inclusion of patient SDOH in health care must be facilitated from the top down, so assessment and documentation can be universally implemented in a pragmatic way that works for providers in a variety of roles and settings for the betterment of health care quality, health equity, and improved population health outcomes. Partnering with community organizations can serve to augment health care organizations’ resource and referral availability for addressing patients’ social needs.

KEYWORDS: social determinants of health, SDOH, health equity, Healthy People 2030, interviews, thematic analysis, health care worker, health care provider, health equity, barrier, facilitator, qualitative study, web-based, patient health, well-being, community health status

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PLoS One (Jul 2023)

Abstract

INTRODUCTION: Food insecurity is prevalent in the U.S. and is associated with deleterious health, behavioral, and social consequences. Food insecurity is currently addressed largely through public and private food assistance programs (e.g., the Supplementary Nutrition Assistance Program, and food pantries). A body of research has explored racial and ethnic disparities and differences in food insecurity and coping strategies. However, limited literature has explored these experiences among Asian Americans and Asian origin groups in the United States.

OBJECTIVE: The aim of this review is to establish what is known about the experience of food insecurity and nutrition program participation in the Asian American population and among Asian origin groups and to suggest further research and policy action to better address food insecurity in this population.

METHODS: Our review is guided by the methodological framework proposed by Arksey and O'Malley and refined and outlined by Levac and colleagues and the Joanna Briggs Institute. We will search key terms related to food insecurity and Asian Americans in Medline (Ovid), the Cochrane Library (Wiley), CINAHL Plus with Full Text (Ebsco), PsycINFO (Ebsco), and Scopus (Elsevier). An article will be included if it was published in the English language; is a peer reviewed research manuscript and reports primary research findings from analyses; and describes food insecurity or strategies to cope with food insecurity among individuals of Asian origins living in the U.S. An article will be excluded if it is a book, conference proceedings, or grey literature (e.g., thesis or dissertation); is a commentary, editorial, or opinion piece without primary research data; contains only research conducted outside of the U.S.; includes Asians in the sample but does not provide separate data on food insecurity or strategies to cope with food insecurity among Asians; and describes only dietary changes or patterns but not food insecurity. Two or more reviewers will participate in the study screening and selection process. We will record information from the final articles chosen to be included in the review in a data table template and will also prepare a summary narrative with key findings.

EXPECTED OUTPUTS: Results will be disseminated through peer-reviewed publications and conference presentations. The findings from this review will be of interest to researchers and practitioners and inform further research and policy to better address food insecurity among this population.

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Journal of Adolescent Health (Jul 2023)

Abstract

PURPOSE: COVID-19 vaccine uptake remains low for US adolescents and contributes to excess morbidity and mortality. Most research has assessed parental intention to vaccinate their children. We explored differences between vaccine-acceptant and vaccine-hesitant unvaccinated US adolescents using national survey data.

METHODS: A nonprobability, quota-based sample of adolescents, aged 13-17 years, was recruited through an online survey panel in April 2021. One thousand nine hundred twenty seven adolescents were screened for participation and the final sample included 985 responses. We assessed responses from unvaccinated adolescents (n = 831). Our primary measure was COVID-19 vaccination intent ("vaccine-acceptant" defined as "definitely will" get a COVID-19 vaccine and any other response classified as "vaccine-hesitant") and secondary measures included reasons for intending or not intending to get vaccinated and trusted sources of COVID-19 vaccine information. We calculated descriptive statistics and chi-square tests to explore differences between vaccine-acceptant and vaccine-hesitant adolescents.

RESULTS: Most (n = 831; 70.9%) adolescents were hesitant, with more hesitancy observed among adolescents with low levels of concern about COVID-19 and high levels of concern about side effects of COVID-19 vaccination. Among vaccine-hesitant adolescents, reasons for not intending to get vaccinated included waiting for safety data and having parents who would make the vaccination decision. Vaccine-hesitant adolescents had a lower number of trusted information sources than vaccine-acceptant adolescents.

DISCUSSION: Differences identified between vaccine-acceptant and vaccine-hesitant adolescents can inform message content and dissemination. Messages should include accurate, age-appropriate information about side effects and risks of COVID-19 infection. Prioritizing dissemination of these messages through family members, state and local government officials, and healthcare providers may be most effective.

KEYWORDS: COVID-19 vaccination; Survey research; Vaccine communication; Vaccine intentions.

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BMC Public Health | June 2023

Abstract

BACKGROUND: Despite the human papillomavirus (HPV) vaccine being a safe, effective cancer prevention method, its uptake is suboptimal in the United States (U.S.). Previous research has found a variety of intervention strategies (environmental and behavioral) to increase its uptake. The purpose of the study is to systematically review the literature on interventions that promote HPV vaccination from 2015 to 2020.

METHODS: We updated a systematic review of interventions to promote HPV vaccine uptake globally. We ran keyword searches in six bibliographic databases. Target audience, design, level of intervention, components and outcomes were abstracted from the full-text articles in Excel databases.

RESULTS: Of the 79 articles, most were conducted in the U.S. (72.2%) and in clinical (40.5%) or school settings (32.9%), and were directed at a single level (76.3%) of the socio-ecological model. Related to the intervention type, most were informational (n = 25, 31.6%) or patient-targeted decision support (n = 23, 29.1%). About 24% were multi-level interventions, with 16 (88.9%) combining two levels. Twenty-seven (33.8%) reported using theory in intervention development. Of those reporting HPV vaccine outcomes, post-intervention vaccine initiation ranged from 5% to 99.2%, while series completion ranged from 6.8% to 93.0%. Facilitators to implementation were the use of patient navigators and user-friendly resources, while barriers included costs, time to implement and difficulties of integrating interventions into the organizational workflow.

CONCLUSIONS: There is a strong need to expand the implementation of HPV-vaccine promotion interventions beyond education alone and at a single level of intervention. Development and evaluation of effective strategies and multi-level interventions may increase the uptake of the HPV vaccine among adolescents and young adults.

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Journal of Women's Health (Jun 2023)

Abstract

BACKGROUND: We examined patterns of smoking in relation to health-related socioeconomic vulnerability (HRSV) among U.S. women early in the pandemic and whether mental health symptoms mediated these relationships. Materials and

METHODS: Data were obtained from the April 2020 National U.S. Women's Health COVID-19 Study (N = 3200). Among current smokers, adjusted odds of increased smoking since the start of the pandemic (vs. same or less) by incident and worsening HRSVs were modeled. Structural equation modeling was used to assess anxiety, depression, and traumatic stress symptoms as mediators of the relationship between six HRSVs (food insecurity; housing, utilities, and transportation difficulties; interpersonal violence; financial strain) and increased smoking early in the pandemic.

RESULTS: Nearly half (48%) of current smokers reported increased smoking since the pandemic started. Odds of increased smoking were higher among women with incident financial strain (aOR = 2.0, 95% CI 1.2-3.3), incident food insecurity (aOR = 2.9, 95% CI 1.7-5.1), any worsening HRSV (aOR = 2.2, 95% CI 1.5-3.0), and worsening food insecurity (aOR = 1.9, 95% CI 1.3-3.0). Anxiety symptoms were a significant, partial mediator of the relationship between increased smoking and any worsening HRSVs (proportion mediated = 0.17, p = 0.001) and worsening food insecurity (0.19, p = 0.023), specifically. Depression symptoms were a significant, partial mediator of the relationship between increased smoking and any worsening HRSVs (0.15, p = 0.004) and incident financial strain (0.19, p = 0.034). Traumatic stress was not a significant mediator of any tested relationship.

CONCLUSIONS: Anxiety and depression symptoms partially explain the relationship between rising socioeconomic vulnerability and increased smoking among women early in the pandemic. Addressing HRSVs and mental health may help reduce increased smoking during a public health crisis.

KEYWORDS: COVID-19 pandemic; anxiety; depression; mental health; smoking; social risks.

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Cancer Causes & Control (Jun 2023)

Abstract

PURPOSE: The Cancer Prevention and Control Research Network (CPCRN) is a national network focused on accelerating the translation of cancer prevention and control research evidence into practice through collaborative, multicenter projects in partnership with diverse communities. From 2003 to 2022, the CPCRN included 613 members.

METHODS: We: (1) characterize the extent and nature of collaborations through a bibliometric analysis of 20 years of Network publications; and (2) describe key features and functions of the CPCRN as related to organizational structure, productivity, impact, and focus on health equity, partnership development, and capacity building through analysis of 22 in-depth interviews and review of Network documentation.

RESULTS: Searching Scopus for multicenter publications among the CPCRN members from their time of Network engagement yielded 1,074 collaborative publications involving two or more members. Both the overall number and content breadth of multicenter publications increased over time as the Network matured. Since 2004, members submitted 123 multicenter grant applications, of which 72 were funded (59%), totaling more than $77 million secured. Thematic analysis of interviews revealed that the CPCRN's success-in terms of publication and grant productivity, as well as the breadth and depth of partnerships, subject matter expertise, and content area foci-is attributable to: (1) its people-the inclusion of members representing diverse content-area interests, multidisciplinary perspectives, and geographic contexts; (2) dedicated centralized structures and processes to enable and evaluate collaboration; and (3) focused attention to strategically adapting to change.

CONCLUSION: CPCRN's history highlights organizational, strategic, and practical lessons learned over two decades to optimize Network collaboration for enhanced collective impact in cancer prevention and control. These insights may be useful to others seeking to leverage collaborative networks to address public health problems.

KEYWORDS: Cancer prevention and control; Collaboration; Community engagement; Implementation science; Mixed methods; Research translation.

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CA: A Cancer Journal for Clinicians |  Jun 2023 

Abstract

There remains a need to synthesize linkages between social determinants of health (SDOH) and cancer screening to reduce persistent inequities contributing to the US cancer burden. The authors conducted a systematic review of US-based breast, cervical, colorectal, and lung cancer screening intervention studies to summarize how SDOH have been considered in interventions and relationships between SDOH and screening. Five databases were searched for peer-reviewed research articles published in English between 2010 and 2021. The Covidence software platform was used to screen articles and extract data using a standardized template. Data items included study and intervention characteristics, SDOH intervention components and measures, and screening outcomes. The findings were summarized using descriptive statistics and narratives. The review included 144 studies among diverse population groups. SDOH interventions increased screening rates overall by a median of 8.4 percentage points (interquartile interval, 1.8–18.8 percentage points). The objective of most interventions was to increase community demand (90.3%) and access (84.0%) to screening. SDOH interventions related to health care access and quality were most prevalent (227 unique intervention components). Other SDOH, including educational, social/community, environmental, and economic factors, were less common (90, 52, 21, and zero intervention components, respectively). Studies that included analyses of health policy, access to care, and lower costs yielded the largest proportions of favorable associations with screening outcomes. SDOH were predominantly measured at the individual level. This review describes how SDOH have been considered in the design and evaluation of cancer screening interventions and effect sizes for SDOH interventions. Findings may guide future intervention and implementation research aiming to reduce US screening inequities.

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Journal of Immigration & Minority Health (Jun 2023)

Abstract

This scoping review provides an overview of cancer interventions implemented with Arab Americans across the cancer control continuum, including an examination of outcomes and implementation processes. The search strategy included database searching and reviewing reference lists and forward citations to identify articles describing interventions with Arab adults living in the US, with no restrictions on date of publication or research methodology. The review included 23 papers describing 12 unique cancer interventions. Most interventions focused on individual-level determinants of breast and cervical cancer screening; used non-quasi-experimental research designs to evaluate intervention effectiveness; and demonstrated improvements in short-term cancer screening knowledge. Implementation processes were less commonly described. Most interventions were culturally and linguistically tailored to communities of focus; were delivered in educational sessions in community settings; engaged with the community mostly for recruitment and implementation; and were funded by foundation grants. Suggestions for research and intervention development are discussed.

KEYWORDS: Arab Americans; Cancer disparities; Cancer intervention; Implementation.

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The journals of gerontology. Series A (Jun 2023)

Abstract

BACKGROUND: Racial and ethnic disparities in COVID-19 risk are well-documented; however, few studies in older adults have examined multiple factors related to COVID-19 exposure, concerns, and behaviors or conducted race- and ethnicity- stratified analyses. The Women's Health Initiative (WHI) provides a unique opportunity to address those gaps.

METHODS: We conducted a secondary analysis of WHI data from a supplemental survey of 48,492 older adults (mean age 84 years). In multivariable-adjusted modified Poisson regression analyses, we examined predisposing factors and COVID-19 exposure risk, concerns, and behaviors. We hypothesized that women from minoritized racial or ethnic groups, compared to Non-Hispanic White women, would be more likely to report: exposure to COVID-19, a family or friend dying from COVID-19, difficulty getting routine medical care or deciding to forego care to avoid COVID-19 exposure, and having concerns about the COVID-19 pandemic.

RESULTS: Asian women and Non-Hispanic Black/African American women had a higher risk of being somewhat/very concerned about risk of getting COVID 19 compared to Non-Hispanic White women and each were significantly more likely than Non-Hispanic White women to report forgoing medical care to avoid COVID-19 exposure. However, Asian women were 35% less likely than Non-Hispanic White women to report difficulty getting routine medical care since March 2020 (aRR 0.65; 95% CI 0.57, 0.75).

CONCLUSION : We documented COVID-related racial and ethnic disparities in COVID-19 exposure risk, concerns, and care-related behaviors that disfavored minoritized racial and ethnic groups, particularly Non-Hispanic Black/African American women.

KEYWORDS: COVID-19; older adults; racial and ethnic disparities; structural racism; women.

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Frontiers in Public Health (May 2023)

Abstract

Like cancer, Alzheimer’s disease and related dementias (ADRD) comprise a global health burden that can benefit tremendously from the power of disease registry data. With an aging population, the incidence, treatment, and mortality from ADRD is increasing and changing rapidly. In the same way that current cancer registries work toward prevention and control, so do ADRD registries. ADRD registries maintain a comprehensive and accurate registry of ADRD within their state, provide disease prevalence estimates to enable better planning for social and medical services, identify differences in disease prevalence among demographic groups, help those who care for individuals with ADRD, and foster research into risk factors for ADRD. ADRD registries offer a unique opportunity to conduct high-impact, scientifically rigorous research efficiently. As research on and development of ADRD treatments continue to be a priority, such registries can be powerful tools for conducting observational studies of the disease. This perspectives piece examines how established cancer registries can inform ADRD registries’ impact on public health surveillance, research, and intervention, and inform and engage policymakers.

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