Category Archives: Announcements

The Science of Caregiving: Bringing Voices Together

The Science of Caregiving: Bringing Voices Together

August 7-8, 2017

Ruth Kirschstein Auditorium, Natcher Building (Building 45)
NIH Campus, Bethesda, MD

Register now and add this event to your calendar.

The National Institute of Nursing Research (NINR) and partners will host a summit that will provide perspectives across the spectrum of caregiving, including the importance of caregiving across the lifespan as well as current and future directions for research to improve the health of patients and caregivers.

The keynote speaker is Judy Woodruff of PBS NewsHour. In addition, the Directors of Ceremonies for the event are Gail Hunt of the National Alliance for Caregiving on August 7th and Dr. Laura Gitlin of Center for Innovative Care in Aging at the Johns Hopkins University School of Nursing on August 8th. The event will bring together an audience of researchers, advocates, healthcare providers, educators, and others interested in the science of caregiving.

About the Event:

This event is free but space is limited and registration is required. To request reasonable accommodations, including sign language interpretation, please contact Nathan Brown at 301-594-9262 / [email protected] or the Federal Relay at 1-800-877-8339 before July 24, 2017.  

For more information, including the agenda, visit Please e-mail NINR’s Division of Science Policy and Public Liaison at [email protected] with any questions. 

New ICMJE Requirements

The International Committee of Medical Journal Editors (ICMJE) believes there is an ethical obligation to responsibly share data generated by interventional clinical trials because trial participants have put themselves at risk. As such, ICMJE has announced new requirements as conditions of consideration for publication of a clinical trial report in ICMJE member journals:

PCRC Data Repository Expansion Grant Awards

The PCRC is pleased to announce two sets of awards.

Congratulations to the award winners of the PCRC grants to support the secondary analysis of existing data in the PCRC Data Repository.  The award winners are:

  • Kathleen M. Akgün, MD, MS, Yale School of Medicine, “Polypharmacy, statin use and 6-month dyspnea trajectories among older adults with serious, life-limiting diseases”
  • Angela Ghesquiere, PhD, MSW, Hunter College, City University of New York, “Exploring Psychological Symptoms as Moderators of Treatment Outcomes in the REST Study”
  • Yael Schenker, MD, MAS, University of Pittsburgh Montefiore Hospital, “Associations between polypharmacy, symptom burden, and quality of life in patients with advanced, life-limiting illness”

The PCRC is thrilled to support these investigators and learn of the findings from their secondary data analyses!

The PCRC also is expanding the PCRC Data Repository to include data from completed end-of-life and palliative care (EOLPC) studies that may have been conducted outside of the PCRC and without PCRC support. In late April, the PCRC published a funding announcement to support the data repository expansion initiative, and we are excited to announce that the PCRC Data Repository will be expanded to include study data from 11 EOLPC research projects! Once incorporated into the PCRC Data Repository, these data will be available to investigators for secondary data analyses. Please see the table below with information about the studies.

Datasets to be included in PCRC Data Repository: Award Winners
Principle Investigator Institution Study Title 
Benzi Kluger, MD, MS University of Colorado Does Outpatient Palliative Care Improve Patient-Centered Outcomes in Parkinson’s Disease
Margaret L. Campbell PhD, RN, FPCN Wayne State University Is death rattle a phenomenon that requires medical treatment?
Margaret L. Campbell PhD, RN, FPCN Wayne State University Rater intensity psychometrics for the Respiratory Distress Observation Scale
Margaret L. Campbell PhD, RN, FPCN Wayne State University Intensity cutpoints substantiation of the Respiratory Distress Observation Scale
Matthew R Baldwin, MD, MS Columbia University Frailty and Outcomes in Critical Illness Survivors-I (FOCIS-I)
Katherine R. Courtright, MD, MS University of Pennsylvania Choice Sets for Advance Directives
Stacy Fischer, MD University of Colorado Apoyo con Carino: (Support Through Caring) Improving Palliative Care Outcomes for Latinos with Advanced Cancer
Amber E. Barnato, MD, MPH, MS University of Pittsburgh Consumer Engagement
Amber E. Barnato, MD, MPH, MS University of Pittsburgh Organizational and Provider Norms of Life-sustaining Treatment Decision Making
Amber E. Barnato, MD, MPH, MS University of Pittsburgh Surrogate’s Heightened Emotions and Life support Decisions (SHEALD)
David Bekelman, MD, MPH VA Eastern Colorado Health Care System Collaborative Care to Alleviate Symptoms and Adjust to Illness in Heart Failure: Randomized Clinical Trial

The investigator and his/her analyst have been invited to attend a half-day workshop in Denver on Tuesday, June 13, 2017 to learn best practices for reproducible research and how to prepare data for inclusion in the repository. The training will be led by the current and former PCRC Data Informatics and Statistics Core (DISC) Directors, Dr. Katie Colborn and Dr. Diane Fairclough, respectively.  This workshop will be recorded (using Zoom), which can then be made available to other investigators wishing to utilize this valuable resource.  Stay tuned!

We encourage you to consider including any study data you may have for which you think additional secondary data analysis could be conducted and support those who need access to these datasets for preliminary data and/or grant proposal preparation.  Thank you in advance for considering adding your work to and conducting secondary analyses using the PCRC’s growing data repository!

For information about how to request data from the PCRC Data Repository, please complete this form on our website:  If you are considering adding study data to the PCRC Data Repository and would like more information, please contact Alexandra Tillman, PCRC Data Manager at [email protected]

New PCRC Publication!

We are happy to share that the PCRC Executive Committee recently published a paper in collaboration with Karen Kehl and Jeri Miller from the National Institute of Nursing Research (NINR). The Journal of Palliative Medicine (JPM) publication, titled, “Better together: The making and maturation of the Palliative Care Research Cooperative Group,” explores the important steps that the PCRC has taken in order to advance the quality and impact of palliative care research.

The publication is now available on JPM’s website:


Upcoming FOA from PCORI

A new, upcoming funding opportunity from the Patient-Centered Outcomes Research Institute (PCORI), entitled, “Symptom Management for Patients with Advanced Illness” will be announced on June 23, 2017.  This advanced notice, which can also be found on the PCORI website, is being provided to allow potential applicants additional time to identify collaborators, obtain stakeholder input on the research question, and develop responsive, high-quality proposals.

Please email [email protected] with any questions related to this funding announcement and please see below for further details about this upcoming funding opportunity.

FOA: Call for proposals for data to be included in the PCRC de-identified Data Repository

FUNDING OPPORTUNITY ANNOUNCEMENT: Call for proposals for data to be included in the PCRC de-identified Data Repository

Do you have data from a completed palliative care and/or end-of-life study that has unanswered questions?  Do you (or your protégés) wish that you could access existing data to conduct secondary analyses?  This opportunity is for you!

Resources are available through the PCRC to support inclusion of de-identified data in the PCRC de-identified Data Repository.

Please use this link to apply:

Applications are due May 04, 2017.  Notifications of approval will be made by May 09, 2017.

Award: $2500 to prepare existing data set for inclusion in PCRC Repository and travel costs for PI and analyst to travel to Denver for ½ day training on Tuesday, June 13, 2017.

The PCRC is seeking applications for investigators to include their study data from palliative care and end-of-life studies in the PCRC de-identified Data Repository. We are especially interested in palliative care or end-of-life clinical trials or large observational studies. Ideally these studies are those that have been listed on, were IRB approved, have resulted in publication(s) in respected peer-reviewed journals and collected sufficient information to allow for secondary analyses. In order to include data in the repository, we will need to comply with your institution’s data use policies and procedures.   Depending on your institution, this may include obtaining official authorization to share the data with the PCRC Data Repository.

(Note: we cannot include Medicare/Medicaid claims data in the PCRC data repository.)

If your study is chosen, you and your data analyst will be invited to attend a ½ day workshop in Denver on Tuesday, June 13, 2017 to learn best practices for reproducible research and how to prepare your data for inclusion in the repository. Travel costs for you and your analyst will be covered by the PCRC. We will also award each recipient $2500 to offset costs associated with preparing the data before sending them to the repository.

Please click here for Frequently Asked Questions about this funding announcement.