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: http://annals.org/aim/article/2630766/data-sharing-statements-clinical-trials-requirement-international-committee-medical-journal
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: http://palliativecareresearch.org/corescenters/disc/data-request-form/. 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]
Abstracts for the 2017 Palliative and Supportive Care in Oncology Symposium are now being accepted! All abstracts are due by July 11, 2017.
For more information, visit: http://ow.ly/2IAe30bKV6u
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: http://online.liebertpub.com/doi/10.1089/jpm.2017.0138
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.
The RFA for the 2018 Paul B. Beeson Emerging Leaders Career Development Award in Aging (K76) has just been announced: https://grants.nih.gov/grants/guide/rfa-files/RFA-AG-18-006.html. Be sure to take a look!
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: https://redcap.ucdenver.edu/surveys/?s=E3CLHPYTRW
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 clinicaltrials.gov, 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.
Applications due by May 2, 2017
Call for proposals for secondary analysis of data that currently exist in the PCRC Data Repository. The PCRC will grant two $50,000 awards to conduct a secondary analysis of repository data. Applications are due May 2, 2017 by 11:59 PM Mountain Time. We strongly encourage you to look at the studies briefly described below, their data dictionaries (linked below) and to search the literature for papers that have been published from these studies previously. The PCRC Executive Committee and Data Informatics and Statistics Core (DISC) leadership will review the applications. Notification of awards will be made by May 10, 2017.
Instructions for applicants:
- Please fill out the online form: https://redcap.ucdenver.edu/surveys/?s=PNPKCRTCYL
- Include a two-page summary of your research plan, aims, which data set you propose to use, budget and timeline (which can be uploaded with the electronic form linked above).
Data that currently exist in the PCRC data repository for analysis include:
- Multisite randomized trial of continuing versus discontinuing statins
- Primary objective: to determine, among patients with life-limiting illness, if there is a difference in the proportion who die within 60 days after enrollment between patients for whom statins are discontinued versus patients who are maintained on the medication
- Secondary objectives: overall survival, important CVD events, QOL, symptoms, performance status (Karnofsky), polypharmacy, satisfaction with care, costs
- Total N: 381, 15 study sites
- Implementation of consensus-based standards for best supportive care in a clinical trial: a pilot study
- Primary objective: using clinician behavior intervention checklist (BSC), test the feasibility of thorough documentation of BSC delivery
- Secondary: estimate variance in the BSC checklist completion; assess provider satisfaction with BSC; evaluate differences in patient experience before and after introduction of the BSC checklist
- Total N: 41 patients and 23 providers, 4 study sites
- Massage therapy versus simple touch to improve pain and mood in patients with advanced cancer: a randomized trial
- Ann Intern Med. 2008 Sep 16;149(6):369-79.
- To evaluate the efficacy of massage for decreasing pain and symptom distress and improving quality of life among persons with advanced cancer
- Repeated measures, six 30-minute massage or simple-touch sessions over 2 weeks
- 380 adults with advanced cancer who were experiencing moderate-to-severe pain; 90% were enrolled in hospice
- Total N: 380 patients, 15 hospice study sites
Please click here for Frequently Asked Questions about this funding announcement.
SAVE THE DATE!
Early May Application Period Opens
Mid-June Application Period Closes
Mid-August Course Begins
Nov 30 & Dec 1: In-Person Training, Bethesda, MD
One of the most critical issues impeding improvements in public health today is the enormous gap between what we know can optimize health and health care and what actually gets implemented in everyday practice. The science of dissemination and implementation (D&I) seeks to address this gap by understanding how best to ensure that evidence-based strategies to improve health and prevent disease are effectively delivered in clinical and public health practice.
In 2017, the institute will utilize a combination of a 3-month online course (six webinar sessions with related assignments) between mid-August and mid-November, and a 2-day in-person training to be held November 30 and December 1, 2017, in North Bethesda, MD. Faculty and guest lecturers will consist of leading experts (practitioners and teachers) in theory, implementation, and evaluation approaches to D&I; creating partnerships and multilevel, transdisciplinary research teams; research design, methods, and analyses appropriate for D&I investigations; and conducting research at different and multiple levels of intervention (e.g., clinical, community, policy). The training is open to researchers with interests in studying D&I across health care, public health, and community settings.
For a background on the training institute, see: “The U.S. training institute for dissemination and implementation research in health.” Implementation Science 2013 8:12.
Once available the Training Institute website will have more details as to participant eligibility and the application process.
NINR and its partners invite you to a summit that will provide perspectives across the spectrum of caregiving, including the importance of caregiving across the lifespan, current research as well as future directions for research, and the role of technology to improve the health of both patients and caregivers.
The summit will bring together an audience of researchers, advocates, healthcare providers, educators, and others interested in the science of caregiving.
The summit will be held August 7–8, 2017 on the NIH campus in Bethesda, Maryland.
For more information, please visit: https://www.ninr.nih.gov/newsandinformation/events/caregivingsummit