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Zohreh Talebizadeh, Ayten Shah
BACKGROUND: Concerns over the need to improve translational aspects of genetics research studies and engaging community members in the research process have been noted in the literature and raised by patient advocates. In addition to the work done by patient advocacy groups, organizations such as the Patient-Centered Outcomes Research Institute advocate for a change in the culture of research from being researcher-driven to becoming more patient-driven. OBJECTIVE: Our project, Autism Genetics and Outcomes (AutGO), consists of two phases...
March 5, 2018: Patient
William J Heerman, Wendy L Bennett, Jennifer L Kraschnewski, Elizabeth Nauman, Amanda E Staiano, Kenneth A Wallston
Background: Since 2014 the Patient Centered Outcomes Research Institute (PCORI) has funded 13 Clinical Data Research Networks (CDRNs) around the country to support large-scale comparative effectiveness research and pragmatic clinical trials. To provide guidance for future recruitment efforts among CDRNs this study described differential willingness to participate in weight-related research by body mass index (BMI) and sociodemographic characteristics. Methods: During 2014-2016 we surveyed participants from three CDRNs including the Mid-South CDRN, REACHnet, and the PaTH Network, representing 14 medical centers...
2018: BMC Obesity
Donald L Chi, Peter Milgrom, Jane Gillette
Purpose: The purpose of this study was to use qualitative methods to describe the key lessons learned during the stakeholder engagement stage of planning a randomized clinical trial comparing outcomes of silver diamine fluoride (SDF) as an alternative to pit-and-fissure sealants in a school-based delivery system. Methods: Eighteen caregivers and community-based stakeholders with involvement in the school-based sealant program Sealants for Smiles from the state of Montana, were recruited for this qualitative study...
February 2018: Journal of Dental Hygiene: JDH
Mark J Pletcher, Christopher B Forrest, Thomas W Carton
The Patient-Centered Outcomes Research Institute (PCORI) launched a multi-institutional "network of networks" in 2013 - Patient-Centered Clinical Research Network (PCORnet) - that is designed to conduct clinical research that is faster, less expensive, and more responsive to the information needs of patients and clinicians. To enhance cross-network and cross-institutional collaboration and catalyze the use of PCORnet, PCORI has supported formation of 11 Collaborative Research Groups focusing on specific disease types (e...
2018: Patient related Outcome Measures
Gabriella Comunián-Carrasco, Guiomar E Peña-Martí, Arturo J Martí-Carvajal
BACKGROUND: Gonorrhoea is a sexually transmitted infection that is caused by Neisseria gonorrhoeae, and is a major public health challenge today. N gonorrhoeae can be transmitted from the mother's genital tract to the newborn during birth, and can cause gonococcal ophthalmia neonatorum as well as systemic neonatal infections. It can also cause endometritis and pelvic sepsis in the mother. This review updates and replaces an earlier Cochrane Review on antibiotics for treating this infectious condition...
February 21, 2018: Cochrane Database of Systematic Reviews
Danielle Whicher, Sarah Philbin, Naomi Aronson
BACKGROUND: About 30 million individuals in the United States are living with a rare disease, which by definition have a prevalence of 200,000 or fewer cases in the United States ([National Organization for Rare Disorders], [About NORD], [2016]). Disease heterogeneity and geographic dispersion add to the difficulty of completing robust studies in small populations. Improving the ability to conduct research on rare diseases would have a significant impact on population health. The purpose of this paper is to raise awareness of methodological approaches that can address the challenges to conducting robust research on rare diseases...
January 19, 2018: Orphanet Journal of Rare Diseases
Blayne Welk, Sara Lenherr, Sean Elliott, John Stoffel, Angela P Presson, Chong Zhang, Jeremy B Myers
STUDY DESIGN: Prospective cross-sectional study. OBJECTIVES: Validate the Neurogenic Bladder Symptom Score (NBSS) for people with spinal cord injury (SCI). SETTING: United States (recruitment from community/tertiary neurourology clinics). METHODS: We used data from a prospective observational study of people with a SCI who enrolled during December 2015-September 2016. Participants completed the NBSS and other measurement tools (SF-12 and SCI-QOL Bladder Management Complications tool)...
November 29, 2017: Spinal Cord
Bardia Nourbakhsh, Nisha Revirajan, Emmanuelle Waubant
BACKGROUND: Fatigue is the most common symptom of multiple sclerosis (MS). Amantadine, modafinil and amphetamine-like stimulants are commonly used in clinical practice for treatment of fatigue; however, the evidence supporting their effectiveness is sparse and conflicting. OBJECTIVE: To describe the design of a trial study funded by Patient-Centered Outcome Research Institute (PCORI) that will compare the efficacy of commonly used fatigue medications in patients with MS...
November 4, 2017: Contemporary Clinical Trials
Marc L Berger
Marc L Berger, MD, is a retired, part-time consultant. He recently became Chair of the Real World Evidence Advisory Board for SHYFT Analytics. Over a 25-year industry career, Marc has held senior-level positions at Pfizer, Inc., OptumInsight, Eli Lilly and Company, and Merck & Co., Inc. His professional activities have included serving on committees for Center for Medicare and Medicaid Services (CMS), Agency for Healthcare Research and Quality (AHRQ), Patient-Centered Outcomes Research Institute (PCORI), the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Drug Information Association (DIA), and the editorial advisory boards of several journals...
October 20, 2017: Journal of Comparative Effectiveness Research
David B Reuben, Priscilla Gazarian, Neil Alexander, Katy Araujo, Dorothy Baker, Jonathan F Bean, Chad Boult, Peter Charpentier, Pamela Duncan, Nancy Latham, Rosanne M Leipzig, Lisa M Quintiliani, Thomas Storer, Siobhan McMahon
In response to the epidemic of falls and serious falls-related injuries in older persons, in 2014, the Patient Centered Outcomes Research Institute (PCORI) and the National Institute on Aging funded a pragmatic trial, Strategies to Reduce Injuries and Develop confidence in Elders (STRIDE) to compare the effects of a multifactorial intervention with those of an enhanced usual care intervention. The STRIDE multifactorial intervention consists of five major components that registered nurses deliver in the role of falls care managers, co-managing fall risk in partnership with patients and their primary care providers (PCPs)...
December 2017: Journal of the American Geriatrics Society
Dawn M Ehde, Kevin N Alschuler, Mark D Sullivan, Ivan P Molton, Marcia A Ciol, Charles H Bombardier, Mary C Curran, Kevin J Gertz, Annette Wundes, Jesse R Fann
BACKGROUND AND OBJECTIVES: Evidence-based pharmacological and behavioral interventions are often underutilized or inaccessible to persons with multiple sclerosis (MS) who have chronic pain and/or depression. Collaborative care is an evidence-based patient-centered, integrated, system-level approach to improving the quality and outcomes of depression care. We describe the development of and randomized controlled trial testing a novel intervention, MS Care, which uses a collaborative care model to improve the care of depression and chronic pain in a MS specialty care setting...
October 4, 2017: Contemporary Clinical Trials
Lauren E Ellis, Nancy E Kass
BACKGROUND: Despite growing interest in patient engagement in research, there are few empirical investigations of the nature of engagement and its effects. This information is important, not only to inform practical decisions researchers and funders must make, but also to inform discussion of the ethical implications of engaging patients, which has received little attention to date. METHODS: The aim of this study was to characterize patient engagement in research funded by the Patient-Centered Outcomes Research Institute (PCORI) as a step toward enhancing current understanding of the nature and effects of engagement and prompting an in-depth consideration of the ethical implications of engaging patients in research...
January 2017: AJOB Empirical Bioethics
Allyn M Bove, Andrew D Lynch, Carlo Ammendolia, Michael Schneider
BACKGROUND CONTEXT: Lumbar spinal stenosis (LSS) is a highly prevalent disease in older adults that causes significant limitations in walking and other daily activities. There is a lack of research into optimal non-surgical treatment approaches for LSS. PURPOSE: The purpose of this qualitative study is to assess the opinions of participants in a randomized clinical trial of nonsurgical LSS treatments regarding the interventions they received, factors contributing to adherence to the interventions, and methods of outcomes assessment...
September 21, 2017: Spine Journal: Official Journal of the North American Spine Society
Cartik Kothari, Maxime Wack, Claire Hassen-Khodja, Sean Finan, Guergana Savova, Megan O'Boyle, Geraldine Bliss, Andria Cornell, Elizabeth J Horn, Rebecca Davis, Jacquelyn Jacobs, Isaac Kohane, Paul Avillach
The heterogeneity of patient phenotype data are an impediment to the research into the origins and progression of neuropsychiatric disorders. This difficulty is compounded in the case of rare disorders such as Phelan-McDermid Syndrome (PMS) by the paucity of patient clinical data. PMS is a rare syndromic genetic cause of autism and intellectual deficiency. In this paper, we describe the Phelan-McDermid Syndrome Data Network (PMS_DN), a platform that facilitates research into phenotype-genotype correlation and progression of PMS by: a) integrating knowledge of patient phenotypes extracted from Patient Reported Outcomes (PRO) data and clinical notes-two heterogeneous, underutilized sources of knowledge about patient phenotypes-with curated genetic information from the same patient cohort and b) making this integrated knowledge, along with a suite of statistical tools, available free of charge to authorized investigators on a Web portal https://pmsdn...
September 1, 2017: American Journal of Medical Genetics. Part B, Neuropsychiatric Genetics
Kavishwar B Wagholikar, Rahul Jain, Eliel Oliveira, Joshua Mandel, Jeffery Klann, Ricardo Colas, Prasad Patil, Kuladip Yadav, Kenneth D Mandl, Thomas Carton, Shawn N Murphy
Research networks for data sharing are growing into a large platform for pragmatic clinical trials to generate quality evidence for shared medical decision-making. Institutions partnering in the networks have made large investments in developing the infrastructure for sharing data. We investigate whether institutions partnering on Patient-Centered Outcomes Research Institute's (PCORI) network can share clinical apps. At two different sites, we imported patient data in PCORI's clinical data model (CDM) format into i2b2 repositories, and adapted the SMART-on-FHIR cell to perform CDM-to-FHIR translation, serving demographics, laboratory results and diagnoses...
2017: AMIA Summits on Translational Science Proceedings
Daniel J Lee, Svetlana Avulova, Ralph Conwill, Daniel A Barocas
INTRODUCTION: There have been significant effort and financial support to engage patients in the design and execution of medical research. However, little is known about the relative benefits or potential impact of involving patients in research, most efficient practices and systems to enhance their involvement, and potential barriers and challenges that are involved with engaging patients. In this review, we will discuss the value of patient centered research, review the challenges that many of these studies faced, and highlight potential future opportunities to enhance patient involvement in urologic research...
July 26, 2017: Urologic Oncology
Stephanie Solomon Cargill, Lauren Lyn Baker, Susan Dorr Goold
AIM: Develop an accessible exercise to engage underserved populations about research funding priorities; analyze the criteria they use to prioritize research; contrast these criteria to those currently used by Patient Centered Outcomes Research Institute (PCORI). MATERIALS & METHODS: Academic and community partners collaborated to develop an Ipad exercise to facilitate group deliberation about PCOR funding priorities. Sixteen groups (n = 183) of underserved individuals in both urban and rural areas participated...
July 7, 2017: Journal of Comparative Effectiveness Research
Aasthaa Bansal, Sean D Sullivan, Dawn L Hershman, Gary H Lyman, William E Barlow, Jeannine S McCune, Scott D Ramsey
Colony stimulating factors (CSF) are widely prescribed to avoid febrile neutropenia (FN) among cancer patients receiving chemotherapy, but studies show their use is often not consistent with practice guidelines. In addition, there is limited high quality evidence assessing benefits and harms of primary prophylactic-CSF (PP-CSF) in the setting of chemotherapy that poses an intermediate risk of FN. To address these issues, with funding from the Patient Centered Outcomes Research Institute (PCORI) and the National Cancer Institute's Community Oncology Research Program, SWOG is sponsoring a prospective, cluster randomized controlled pragmatic trial of an automated order entry protocol for PP-CSF among patients with breast, lung and colorectal cancer receiving myelosuppressive chemotherapy, with a nested randomized controlled trial of PP-CSF for patients receiving intermediate risk chemotherapy...
July 7, 2017: Journal of Comparative Effectiveness Research
Andrea K Newman, Benjamin P Van Dyke, Calia A Torres, Jacob W Baxter, Joshua C Eyer, Shweta Kapoor, Beverly E Thorn
Chronic pain is a pervasive condition that is complicated by economic, educational, and racial disparities. This study analyzes key factors associated with chronic pain within an understudied and underserved population. The sample is characterized by a triple disparity with respect to income, education/literacy, and racial barriers that substantially increase the vulnerability to the negative consequences of chronic pain. The study examined the pretreatment data of 290 participants enrolled in the Learning About My Pain trial, a randomized controlled comparative effectiveness trial of psychosocial interventions (B...
September 2017: Pain
Laura Forsythe, Andrea Heckert, Mary Kay Margolis, Suzanne Schrandt, Lori Frank
PURPOSE: Since 2012, PCORI has been funding patient-centered comparative effectiveness research with a requirement for engaging patients and other stakeholders in the research, a requirement that is unique among the US funders of clinical research. This paper presents PCORI's evaluation framework for assessing the short- and long-term impacts of engagement; describes engagement in PCORI projects (types of stakeholders engaged, when in the research process they are engaged and how they are engaged, contributions of their engagement); and identifies the effects of engagement on study design, processes, and outcomes selection, as reported by both PCORI-funded investigators and patient and other stakeholder research partners...
May 12, 2017: Quality of Life Research
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