Development of an NIA Practice-Based Research Network to Conduct Alzheimer’s and Related Dementias Clinical Research

Friday, 30 April 2021 2:00 PM - 5:00 PM EDT

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Friday, 30 April 2021 2:00 PM - 5:00 PM EDT

Overview: The National Institute on Aging (NIA) will be hosting a virtual meeting to discuss the potential and planning of a practice-based research network (PBRN) to address the disparities gap with the recruitment and retention of diverse and underserved populations to AD/ADRD clinical research studies.

PBRNs are groups of health care clinicians and practices working together to answer community-based health care questions and translate research findings into practice—they have the potential to directly engage diverse and underserved communities in AD/ADRD clinical research. Attendees will leave with a clear understanding of what a PBRN is, learn about NIH and external PBRN examples, and provide input for future considerations regarding the use of a PBRN. 

Rationale: In October 2018, the NIA and its partners released Together We Make the Difference: National Strategy for Recruitment and Participation in Alzheimer’s and Related Dementias Clinical Research, an overarching plan to address four themes: 1) increase awareness and engagement at a broad, national level; 2) build and improve capacity and infrastructure at the study site level; 3) engage local communities and support participants; and 4) develop an applied science of recruitment. 

Data indicate that Blacks/African Americans, Latinos/Hispanic Americans, Asian American and Pacific Islanders (AAPI), and other minority populations are substantially underrepresented in AD/ADRD clinical studies and that too few clinical studies and limited research infrastructure are available in their communities.  A long-term solution is to invest in efforts that will build sustainably and mutually beneficial relationships within diverse and underserved communities.

Given the high interest in this webinar, we are seeking input from attendees in advance to ensure that the speakers address your key questions. Please take a few minutes to complete a brief Google poll by April 13th.

 

Agenda:

2:00 PM - 2:20 PM

Welcome: Marie Bernard, M.D., Deputy Director, NIA and Holly Massett, Ph.D., Senior Advisor on Clinical Research Recruitment and Engagement, NIA

Introductory Remarks: Janet Woodcock, M.D., Acting Commissioner, FDA

 

2:20 PM - 3:10 PM

Keynote Speaker: Jonathan Tobin, Ph.D.

What is a Practice-Based Research Network?

Dr. Tobin will provide an overview of PBRNs, including sponsorship and governanace models, and the roles and priorities of key stakeholders, such as academic researchers, clinician researchers, and patients. He also will describe examples of PBRNs.

 

3:10 PM - 4:00 PM

Keynote Speaker: Lori Minasian, M.D. 

Lessons Learned: Development and History of the National Cancer Institute's Community Clinical Oncology Program (CCOP)

Dr. Minasian will discuss the development and history of NCI's Community Clinical Oncology Program, how it functioned, its achievements and influence on other NIH networks, and its evolution into the NCI Community Oncology Research Program (NCORP). 

 

4:00 PM - 4:55 PM

Panel Speakers: Jennifer Manly, Ph.D., Andrea Gilmore-Bykovskyi, Ph.D., R.N., and Jaime Perales Puchalt, Ph.D., M.P.H., and Jonathan Jackson, Ph.D. 

Key Considerations for the Planning and Development of a PBRN for AD/ADRD

Our panelists will discuss important considerations in planning for and establishing a PBRN for conducting AD/ADRD research, including topics related to investment and infrastructure needs, engaging underserved populations, accountability, and relationships among the PBRN sites. 

 

4:55 PM - 5:00 PM

Closing Remarks

 

 To access the event on 4/30/21 starting at 2 PM EDT, please click or enter this address in your browser: https://videocast.nih.gov/watch=41795 

 

 

National Institute on Aging

The National Institute on Aging (NIA) funds 31 Alzheimer's Disease Research Centers (ADRCs) at major medical institutions across the United States. Researchers at these Centers are working to translate research advances into improved diagnosis and care for people with Alzheimer's disease, as well as working to find a treatment or way to prevent Alzheimer's and other types of dementia. In addition, NIA funds four Exploratory ADRCs that are designed to expand and diversify research and education opportunities to new areas of the country, new populations, and new areas of science and approaches to research.

Contact the Organizer

Learn more aboutMarie A. Bernard, M.D. Marie A. Bernard, M.D.
Marie A. Bernard, M.D.
Deputy Director of the National Institute on Aging (NIA) at the National Institutes of Health, NIH Chief Officer for Scientific Workforce Diversity

Marie A. Bernard, M.D., serves as Deputy Director of the National Institute on Aging (NIA) at the National Institutes of Health. As NIA’s senior geriatrician, she is the principal advisor to the NIA director. She additionally serves as the acting NIH Chief Officer for Scientific Workforce Diversity. For the Department of Health and Human Services, she has co-chaired two Healthy People 2020/2030 objectives: 1) Older Adults and 2) Dementias, including Alzheimer’s Disease. Within NIH she co-chairs the Inclusion Governance Committee that oversees inclusion in clinical research by sex/gender, race/ethnicity, and age — inclusive of pediatric and older adult subjects. She chairs the Women of Color Committee of the NIH Working Group on Women in Biomedical Careers. She also serves on the Diversity Working Group and was a founding member of the NIH Equity Committee. She has been recognized for her leadership by receipt of the Clark Tibbitts Award from the Academy for Gerontology in Higher Education (2013), the Donald P Kent Award from the Gerontological Society of America (2014), and NIH Director’s Awards in 2018 and 2019. She is the 2020 recipient of the NIH Director’s Award for Equity, Diversity, and Inclusion. She has lectured and published widely in her area of research, nutrition and function in older populations with special focus on underrepresented minorities, as well as related to geriatric education. She received her undergraduate education at Bryn Mawr College and her MD from University of Pennsylvania. She trained in internal medicine at Temple University Hospital in Philadelphia, PA, where she also served as chief resident. She has received additional training through the Association of American Medical Colleges Health Services Research Institute, the Geriatric Education Center of Pennsylvania, and the Wharton School Executive Development program.

About Marie A. Bernard, M.D.

Deputy Director of the National Institute on Aging (NIA) at the National Institutes of Health, NIH Chief Officer for Scientific Workforce Diversity
Learn more aboutJanet Woodcock, M.D. Janet Woodcock, M.D.
Janet Woodcock, M.D.
Acting Commissioner of U.S. Food and Drug Administration

Dr. Janet Woodcock began her long and distinguished FDA career in 1986 with the agency’s Center for Biologics Evaluation and Research (CBER) as Director of the Division of Biological Investigational New Drugs. She also served as CBER’s Acting Deputy Director, and later as Director of the Office of Therapeutics Research and Review. In 1994, Dr. Woodcock was named Director of the FDA’s Center for Drug Evaluation and Research (CDER), overseeing the center’s work that is the world’s gold standard for drug approval and safety. In that position, she has led many of the FDA’s groundbreaking drug initiatives. She has also served in other leadership roles at the FDA, including as Deputy Commissioner and Chief Medical Officer. With the onset of the COVID-19 public health emergency last year, Dr. Woodcock was asked to lend her expertise to “Operation Warp Speed” the initiative to develop therapeutics in response to the pandemic. Dr. Woodcock was named Acting Commissioner of Food and Drugs on January 20, 2021. Dr. Woodcock has received numerous honors during her distinguished public health career, including: a Lifetime Achievement Award in 2015 from the Institute for Safe Medication Practices; the Ellen V. Sigal Advocacy Leadership Award in 2016 from Friends of Cancer Research; the Florence Kelley Consumer Leadership Award in 2017 from the National Consumers League; the 2019 Biotechnology Heritage Award from the Biotechnology Innovation Organization and Science History Institute; and the 2020 Lifetime Achievement Award from NORD. She is also an avid and accomplished gardener.

About Janet Woodcock, M.D.

Acting Commissioner of U.S. Food and Drug Administration
Learn more aboutHolly A. Massett, Ph.D. Holly A. Massett, Ph.D.
Holly A. Massett, Ph.D.
Senior Advisor on Clinical Research Recruitment and Engagement at the National Institute on Aging (NIA)

Holly A. Massett, PhD, is the Senior Advisor on Clinical Research Recruitment and Engagement at the National Institute on Aging (NIA), where she leads the development of programs and informatics systems to enhance accountability in NIA clinical studies with respect to health equity and performance. Dr. Massett has over 25 years of professional experience in program evaluation, consumer research, and social marketing. Prior to joining NIA, she spent 15 years at the National Cancer Institute (NCI) working with its early and late phase clinical trial networks to develop and apply systematic accrual practices to support challenging trials and increase trial-related efficiencies; she also held the position of Associate Director of NCI’s Office of Market Research and Evaluation. Before serving in the federal government, Dr. Massett was Vice President of Health Research at Porter Novelli; and held senior research positions at RTI International and the Academy for Educational Development. She has overseen research for national health campaigns sponsored by the Centers for Disease Control and Prevention, the March of Dimes, and the Robert Wood Johnson Foundation. Dr. Massett received her Ph.D. from the University of Maryland in Health Communication with a secondary emphasis in intercultural communication and anthropology.

About Holly A. Massett, Ph.D.

Senior Advisor on Clinical Research Recruitment and Engagement at the National Institute on Aging (NIA)
Learn more aboutJonathan N. Tobin, Ph.D. Jonathan N. Tobin, Ph.D.
Jonathan N. Tobin, Ph.D.
President/CEO of Clinical Directors Network (CDN), Senior Epidemiologist and Co-Director, Community-Engaged Research, The Rockefeller University Center for Clinical and Translational Science

Jonathan N. Tobin, Ph.D. is a cardiovascular epidemiologist and Professor in the Department of Epidemiology and Population Health at Albert Einstein College of Medicine. He is also an Adjunct Professor at The Rockefeller University Laboratory for Blood and Vascular Biology, where he is Co-Director for Community Engaged Research in the Center for Clinical and Translation Science. Dr. Tobin is President/CEO of Clinical Directors Network, Inc. (www.CDNetwork.org), a Practice-based Research Network (PBRN) dedicated to conducting primary care-based comparative effectiveness research (CER) in medically underserved communities, and an AHRQ-designated Center of Excellence (P30) for practice-based research and learning. Dr. Tobin has developed and implemented large, multi-site, experimental and observational studies with Community Health Centers (CHCs), other safety-net providers, and Academic Health Centers for over 25 years, serving as a PI and Co-PI on grants and contracts with NIMH, NHLBI, NCI, NIAID, NIDA, NIDCR, NIDDK, SAMHSA, CDC, HRSA, EPA, AHRQ, and PCORI. Under his leadership at CDN, over 120,000 low income, minority, and female patients have been enrolled into studies on stress, depression, PTSD, hypertension, diabetes, cardiovascular diseases, HIV/AIDS, MRSA and other disorders.

About Jonathan N. Tobin, Ph.D.

President/CEO of Clinical Directors Network (CDN), Senior Epidemiologist and Co-Director, Community-Engaged Research, The Rockefeller University Center for Clinical and Translational Science
Learn more aboutLori Minasian, M.D. Lori Minasian, M.D.
Lori Minasian, M.D.
Deputy Director for the National Cancer Institute (NCI) Division of Cancer Prevention

Dr. Lori Minasian is the Deputy Director for the National Cancer Institute (NCI) Division of Cancer Prevention. She is a board-certified medical oncologist, who for 15 years led the NCI’s Community Clinical Oncology Program (CCOP). This program is a community-based clinical trials network created in 1983 as a mechanism for community physicians to partner with academic investigators for the purpose of accelerating the implementation of NCI clinical trials in cancer treatment, prevention and control, including a focus on minority-based communities. In 2014, CCOP evolved into NCI’s current community program, the NCI Community Oncology Research Program (NCORP). As a leader in cancer clinical trials, Dr. Minasian has served on multiple internal NCI committees and external working groups evaluating the clinical and scientific needs and operational efficiency of clinical trials methods and processes. She has served in an advisory capacity for the NIH Roadmap and the development of clinical trials networks at other NIH institutes. She is one of the senior staff involved in conceptualization and development of the Patient Reported Outcomes version of the Common Terminology Criteria for Adverse Event Reporting, a project emphasizing the importance of incorporating the patient’s perception into real-time reporting of adverse events. Because the practice of oncology is rapidly evolving, Dr. Minasian maintains her clinical skills by attending in the Medical Ovarian Cancer Clinic at the NIH Clinical Center. She is an active member of the clinical team involved in patient care, the development and implementation of clinical trials using novel agents and teaching the NCI oncology fellows.

About Lori Minasian, M.D.

Deputy Director for the National Cancer Institute (NCI) Division of Cancer Prevention
Learn more aboutJennifer Manly, Ph.D. Jennifer Manly, Ph.D.
Jennifer Manly, Ph.D.
Professor, Taub Institute for Research on Alzheimer’s Disease and the Aging Brain, Department of Neurology, Columbia University Irving Medical Center

Jennifer Manly, Ph.D. is a Professor of Neuropsychology in Neurology at the Taub Institute for Research in Alzheimer’s Disease and the Aging Brain at Columbia University. Her research focuses on mechanisms of disparities in cognitive aging and Alzheimer’s Disease. In order to do this research, her research team has partnered with the Black and Latinx communities around CUIMC and around the country to design and carry out investigations of social factors across the lifecourse, such as educational opportunities, racism and discrimination, and socioeconomic status, and how these factors relate to cognition and brain health later in life. She served on the US Department of Health and Human Services Advisory Council on Alzheimer's Research, Care and Services from 2011 – 2015 and is a member of the National Advisory Council on Aging.

About Jennifer Manly, Ph.D.

Professor, Taub Institute for Research on Alzheimer’s Disease and the Aging Brain, Department of Neurology, Columbia University Irving Medical Center
Learn more aboutAndrea Gilmore-Bykovskyi, Ph.D., R.N. Andrea Gilmore-Bykovskyi, Ph.D., R.N.
Andrea Gilmore-Bykovskyi, Ph.D., R.N.
Assistant Professor, School of Nursing, University of Wisconsin-Madison

Dr. Gilmore-Bykovskyi is an Assistant Professor at the University of Wisconsin-Madison and Investigator in the Wisconsin Alzheimer’s Disease Research Center Care Research Core. A 2018 recipient of a Paul B. Beeson Emerging Leaders Career Development Award, Dr. Gilmore-Bykovskyi leads a program of research focused on promoting effective and equitable care and research for persons living with, and at risk for Alzheimer’s disease and related dementias. She has served on regional and national initiatives to address complex care needs of persons living with dementia, and frequently partnered directly with people with dementia and caregivers to fully integrate their perspectives into the research process and results.

About Andrea Gilmore-Bykovskyi, Ph.D., R.N.

Assistant Professor, School of Nursing, University of Wisconsin-Madison
Learn more aboutJaime Perales Puchalt, Ph.D., M.P.H. Jaime Perales Puchalt, Ph.D., M.P.H.
Jaime Perales Puchalt, Ph.D., M.P.H.
Assistant Professor, University of Kansas Alzheimer's Disease Center

Jaime Perales Puchalt, Ph.D., MPH, is an Assistant Professor at the University of Kansas Alzheimer's Disease Center. His background is in psychology and public health. In addition to conducting research in Spain, England and the United States, Dr. Perales Puchalt has collaborated with teams from other countries in the European Union and the Americas. With a primary focus on reducing Latino dementia disparities, his research has led to the development of a dementia educational/recruitment tool for Latinos. He has also studied the risk of dementia and mild cognitive impairment among sexual and ethnoracial minorities. He currently has two NIH-funded projects to improve Latino families’ access to dementia care.

About Jaime Perales Puchalt, Ph.D., M.P.H.

Assistant Professor, University of Kansas Alzheimer's Disease Center
Learn more aboutJonathan Jackson, Ph.D. Jonathan Jackson, Ph.D.
Jonathan Jackson, Ph.D.
Director, CARE Research Center, Massachusetts General Hospital, Harvard Medical School

Dr.Jonathan Jackson, PhD, is the executive director of the Community Access, Recruitment, and Engagement (CARE) Research Center at Massachusetts General Hospital and Harvard Medical School. CARE investigates the impact of diversity and inclusion on the quality of human subjects research and leverages deep community entrenchment to build trust and overcome barriers to clinical trial participation. His research focuses on midlife and late-life health disparities in clinical settings that affect underserved populations. Dr. Jackson also works as a cognitive neuroscientist, investigating the early detection of Alzheimer’s disease, particularly in the absence of overt memory problems. He has become a well-known representative to underserved communities and dozens of affiliated organizations, particularly regarding participation in clinical research. Dr. Jackson serves on the leadership team of several organizations focused on community health, and has written guidance for local, statewide, and national groups on research access, engagement, and recruitment.

About Jonathan Jackson, Ph.D.

Director, CARE Research Center, Massachusetts General Hospital, Harvard Medical School

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