News

Allore joins JAMAevidence podcast to discuss latent class analysis to identify hidden clinical phenotypes

Posted on by Sonya Sutton

Heather Allore, PhD, Core Leader for the IMPACT Design and Statistics Core, recently appeared on the JAMAevidence podcast to discuss latent class analysis to identify hidden clinical phenotypes. A latent variable is an unobserved variable that investigators don’t have a construct or measure for, but believe it exists and could impact outcomes. Dr. Allore uses frailty as an example of latent variables in the discussion.

The podcast was hosted by JAMA Statistical Editor Roger Lewis, MD, PHD and is a supplement to the JAMA Guide to Statistics and Methods.

Listen to the podcast at this link.

Quiñones among presenters for GSA preconference workshop

Posted on by Sonya Sutton

Ana Quiñones, PhD, MS, Team Leader of the IMPACT Health Equity Team, will be among the presenters at the Gerontological Society of America’s preconference workshop on November 2nd.

The workshop will focus on the pragmatic clinical trial as an exemplar of an innovative research design that can foster the performance of trials in real world settings, with representative patient populations, and outcome measures that “matter most” to patients and caregivers. Leaders of funded projects will describe how they applied pragmatic trial principles in study design and implementation. The advantages and challenges of conducting pragmatic clinical trials with diverse populations of older adults, including those living with Alzheimer’s disease and Alzheimer’s disease related dementias (AD/ADRD), will be discussed.

Dr. Quiñones will discuss MCCs, Diversity, and Inclusion from 1:00 PM to 1:45 PM.

Registration is open to RCMAR Faculty and Scientists (current and alumni). Click here to read the full description and agenda.

Check out the new LTC Data Cooperative, a new resource for investigators interested in improving care in nursing homes!

Posted on by Erin Luers

We are excited to share information about the Long-Term Care (LTC) Data Cooperative, and invite you to check out the website to learn more. Led by American Health Care Association (AHCA), the LTC Data Cooperative is an outgrowth of work led by Vince Mor, PhD in response to COVID-19.  This initiative brings together healthcare systems and data management resources to create the largest integrated database of detailed, normalized, electronic health record (EHR) data from nursing homes (NH) in the United States. The EHR data can also be linked to Medicare claims data.

The LTC Data Cooperative’s comprehensive data set will facilitate researchers’ ability to test the impact of treatments and other interventions intended to better the lives of NH residents through observational studies and pragmatic clinical trials. This will enable researchers to generate real-world evidence on the effectiveness of different treatments and care practices for older adults, individuals with disabilities, and people living with dementia in nursing homes.
In addition, the LTC Data Cooperative will serve four broad functions:

  • Assist providers with health care operations, including care coordination for residents who transfer between skilled nursing facilities
  • Support public health monitoring for medical conditions and infections, including COVID-19
  • Enable observational studies of the LTC population, ranging from policy evaluations to epidemiological studies to pharmaco-epidemiological studies
  • Facilitate provider and patient recruitment into clinical research studies, including stage 3 and 4 embedded pragmatic clinical trials

Vincent Mor, PhD, reflects that “Thirty years ago, the minimum data set made it possible to characterize the needs of nursing home residents and to document the impact of new treatments and policies. This initiative transforms this effort by linking ‘real-time’ clinical data, including lab results and orders, in ways that can transform the delivery of care to the increasingly vulnerable population of nursing home residents.”

Questions?
Email us with questions or to learn more: LTCDataCooperative@AHCA.org

Apply Now for the 3rd Annual Virtual ePCT Training Workshop | January 25-26, 2023

Posted on by Erin Luers

Building Skills to Conduct Embedded Pragmatic Clinical Trials for People Living with Dementia and their Care Partners

Wednesday, January 25th, 2023  |  11:00am - 3:30pm ET
Thursday, January 26th, 2023  |  11:00am - 5:00pm ET

Apply here!

This year’s modules will focus on:

  • Using real-world data to identify PLWD and ascertain outcomes in ePCTs
  • Designing the implementation evaluation for an ePCT
  • Defining a pilot: What is a pilot study for an ePCT?

The IMPACT Collaboratory will hold our third annual Training Workshop on January 25-26, 2023 entitled Building Skills to Conduct Embedded Pragmatic Clinical Trials (ePCTs) among People Living with Dementia (PLWD) and their Care Partners. This 1.5-day virtual workshop features all new material to build a foundation in practical aspects of designing and conducting ePCTs in Alzheimer’s disease (AD) and AD-related dementias (ADRD). The workshop will include a combination of activities including: panel discussions, small group sessions, and networking opportunities with experts in the field.

We are inviting applications from early to mid-stage researchers who seek to develop competence in designing and conducting ePCTs of non-pharmacological interventions embedded in health care systems for PLWD and care partners.

Upon completion of the workshop, participants will be able to:

  • Transmit knowledge about designing and conducting ePCTs among PLWD and care partners in health care systems that integrates considerations related to identifying PLWD and ascertaining pragmatic outcomes
  • Problem-solve common challenges in designing and conducting ePCTs for PLWD and care partners
  • Apply the acquired knowledge to move their current and future research in ePCTs forward, including applying for competitive funding

Successful applicants will be expected to complete selected readings and online training prior to the workshop. All participants are expected to attend and participate in the entire 1.5-day event.

HOW TO APPLY

Please submit your online application using the following link:
IMPACT Training Workshop Application

Deadline: October 21, 2022

Eligibility Criteria:

  • Applicants should have an MD, PhD, or equivalent research degree
  • Hold a full-time position at an academic or research organization in the United States
  • Early-stage investigators pursuing careers conducting ePCTs in AD/ADRD
  • Mid-career investigators seeking to pursue research on ePCTs in AD/ADRD

Individuals from underrepresented racial and ethnic groups as well as individuals with disabilities are encouraged to apply.

Selection Criteria: Applicants will be selected based on their demonstrated commitment to improving care of PLWD and/or their care partners through the conduct of ePCTs in HCS and the potential impact of the workshop on promoting the applicant’s career in this area.

Find the working agenda and more information about the workshop on our website at impactcollaboratory.org/training-workshop. Email IMPACTcollaboratory@hsl.harvard.edu with questions regarding this opportunity.

NIH Collaboratory Webinar Series on Ethics and Regulatory Challenges in Pragmatic Clinical Trials starts September 9th

Posted on by Sonya Sutton

The NIH Pragmatic Trials Collaboratory is holding a special Grand Rounds series to examine ethical and regulatory challenges in pragmatic clinical trials. Over the past decade, the program’s Ethics and Regulatory Core has worked with investigators to navigate ethical and regulatory complexities associated with research conducted within healthcare systems. With this new Grand Rounds series, the Core is bringing together bioethicists, investigators, and regulatory experts to share lessons learned, discuss empirical findings, and explore remaining uncertainties.

The webinar series, Ethical and Regulatory Dimensions of Pragmatic Clinical Trials, will kick off on Friday, September 9, at 1:00 pm ET with a keynote presentation by Steven Joffe, MD, MPH, of the University of Pennsylvania and Executive Committee member of the IMPACT Ethics and Regulation Core. Sessions will continue on the second Friday each month through February 2023 and include presentations from IMPACT executive committee members including: Monica Taljaard, PhD and Emily Largent, JD, PhD, RN. Attendance is free and open to the public. Learn more and view the full schedule.

IMPACT Lived Experience Panel releases two reports on research study outcomes and ethics in ePCTs for PLWD and their care partners

Posted on by Sonya Sutton

Reports from the first two series of meetings with the IMPACT Lived Experience Panel (LEP) are now available on the IMPACT website.  The two reports share highlights and insights gained during meetings with the LEP facilitated by IMPACT’s Patient Caregiver Relevant Outcomes Core and the Ethics and Regulation Core in the first cycle of the Lived Experience Panel. The LEP reflects a coordinated effort between the IMPACT Collaboratory and the Alzheimer’s Association.

The 2021-2022 Lived Experience Panel Report: Priorities for Person and Caregiver Relevant Outcomes in Dementia Intervention Research, by Antonia V. Bennett, PhD, Laura C. Hanson, MD, MPH, Gary Epstein-Lubow, MD, Sheryl Zimmerman, PhD, summarizes the discussions with the Lived Experience Panel and members from the Patient Caregiver Relevant Outcomes Core about research study outcomes that are important to people living with dementia and their care partners.

The 2021-2022 Lived Experience Panel Report: Ethical Challenges in Conducting Research Using a Waiver of Informed Consent with People Living with Dementia, by Emily Largent, PhD, JD, RN, Jason Karlawish, MD Steve Joffe, MD, MPH, Gary Epstein-Lubow, MD, documents the insights gained from two meetings between members of IMPACT’s Ethics and Regulation Core and the Lived Experience Panel, featuring conversations regarding the ethical challenges related to conducting embedded pragmatic clinical trials among people living with dementia and their care partners using waivers of informed consent.