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Article ; Online: Patient Perspective on Xenotransplantation.

Baliker, Mary / V Roberts, Glenda

Kidney360

2022 Volume 3, Issue 11, Page(s) 1953–1954

MeSH term(s)	Humans ; Transplantation, Heterologous ; Islets of Langerhans Transplantation ; Patient Selection
Language	English
Publishing date	2022-10-11
Publishing country	United States
Document type	Journal Article
ISSN	2641-7650
ISSN (online)	2641-7650
DOI	10.34067/KID.0003542022
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article ; Online: The Early Days: The Postkidney Transplant Recipients' COVID-19 Journey.

Roberts, Glenda V / Gee, Patrick O

Clinical journal of the American Society of Nephrology : CJASN

2020 Volume 15, Issue 9, Page(s) 1221–1223

MeSH term(s)	Adaptation, Psychological ; Betacoronavirus/immunology ; Betacoronavirus/pathogenicity ; COVID-19 ; Coronavirus Infections/immunology ; Coronavirus Infections/prevention & control ; Coronavirus Infections/transmission ; Coronavirus Infections/virology ; Cost of Illness ; Female ; Health Knowledge, Attitudes, Practice ; Host Microbial Interactions ; Humans ; Immunocompromised Host ; Immunosuppressive Agents/administration & dosage ; Immunosuppressive Agents/adverse effects ; Kidney Transplantation/adverse effects ; Male ; Opportunistic Infections/immunology ; Opportunistic Infections/prevention & control ; Opportunistic Infections/transmission ; Opportunistic Infections/virology ; Pandemics/prevention & control ; Patient Education as Topic ; Patient Safety ; Pneumonia, Viral/immunology ; Pneumonia, Viral/prevention & control ; Pneumonia, Viral/transmission ; Pneumonia, Viral/virology ; Risk Assessment ; Risk Factors ; SARS-CoV-2 ; Self Care
Chemical Substances	Immunosuppressive Agents
Keywords	covid19
Language	English
Publishing date	2020-07-29
Publishing country	United States
Document type	Editorial
ZDB-ID	2226665-3
ISSN	1555-905X ; 1555-9041
ISSN (online)	1555-905X
ISSN	1555-9041
DOI	10.2215/CJN.08780620
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Article: The Early Days: The Postkidney Transplant Recipients' COVID-19 Journey

Roberts, Glenda V / Gee, Patrick O

Clin J Am Soc Nephrol

Keywords	covid19
Publisher	WHO
Document type	Article
Note	WHO #Covidence: #691026
Database	COVID19

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Article ; Online: Precision medicine in kidney disease: the patient's view.

Brown, Keith D / Campbell, Catherine / Roberts, Glenda V

Nature reviews. Nephrology

2020 Volume 16, Issue 11, Page(s) 625–627

Abstract: Research in the field of nephrology continues to improve our understanding of the mechanisms that promote and drive kidney disease, including how human genetic variation might affect disease predisposition and progression. One of the goals of these ... ...

Abstract	Research in the field of nephrology continues to improve our understanding of the mechanisms that promote and drive kidney disease, including how human genetic variation might affect disease predisposition and progression. One of the goals of these research efforts is to inform and enable the implementation of precision medicine, whereby patient management is tailored to the individual according to the mechanisms underlying their disease to increase the chances of therapeutic success. To achieve this goal, we need a clearer understanding of the molecular pathways that underlie the many different causes of kidney failure. These research insights are being increasingly translated and implemented into clinical practice. In this Viewpoint, we asked three individuals who have been affected by kidney failure for their views on the importance of understanding the drivers of kidney disease and, on a personal level, what they hope might be achieved with this information.
MeSH term(s)	Humans ; Kidney Diseases/therapy ; Nephrology/trends ; Patients/psychology ; Precision Medicine/psychology
Keywords	covid19
Language	English
Publishing date	2020-08-05
Publishing country	England
Document type	Journal Article ; Research Support, N.I.H., Extramural
ZDB-ID	2490366-8
ISSN	1759-507X ; 1759-5061
ISSN (online)	1759-507X
ISSN	1759-5061
DOI	10.1038/s41581-020-0319-0
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Zs.A 6334: Show issues			Location: Je nach Verfügbarkeit (siehe Angabe bei Bestand) bis Jg. 2021: Bestellungen von Artikeln über das Online-Bestellformular ab Jg. 2022: Lesesaal (EG)
Zs.MG 107: Show issues

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Article ; Online: Kidney Biopsy Utility: Patient and Clinician Perspectives from the Kidney Precision Medicine Project.

Bernard, Lauren / Wang, Ashley R / Menez, Steven / Henderson, Joel M / Dighe, Ashveena / Roberts, Glenda V / Stutzke, Christine / Tuttle, Katherine R / Miller, R Tyler

Kidney medicine

2023 Volume 5, Issue 10, Page(s) 100707

Abstract: Rationale & objective: Limited data exist on patient perspectives of the implications of kidney biopsies. We explored patients' perspectives alongside those of clinicians to better understand how kidney biopsies affect patients' viewpoints and the ... ...

Abstract	Rationale & objective: Limited data exist on patient perspectives of the implications of kidney biopsies. We explored patients' perspectives alongside those of clinicians to better understand how kidney biopsies affect patients' viewpoints and the clinical utility of biopsies. Study design: Prospective Cohort Study. Setting & participants: Patient participants and clinicians in the Kidney Precision Medicine Project, a prospective cohort study of patients who undergo a research protocol biopsy, at 9 recruitment sites across the United States. Surveys were completed at enrollment before biopsy and additional timepoints after biopsy (participants: 28 days, 6 months; clinicians: 2 weeks). Analytical approach: Kappa statistics assessed prebiopsy etiology concordance between clinicians and participants. Participant perspectives after biopsy were analyzed using a thematic approach. Clinician ratings of clinical management value were compared to prebiopsy ratings with Wilcoxon matched-pairs signed-rank tests and paired Results: A total of 167 participants undergoing biopsy (124 participants with chronic kidney disease [CKD], 43 participants with acute kidney injury [AKI]) and 58 clinicians were included in this study. CKD participants and clinicians had low etiology concordance for the 2 leading causes of CKD: diabetes (k = 0.358) and hypertension (k = 0.081). At 28 days postbiopsy, 46 (84%) participants reported that the biopsy affected their understanding of their diagnosis, and 21 (38%) participants reported that the results of the biopsy affected their medications. Participants also shared biopsy impressions in free-text responses, including impacts on lifestyle and concurrent condition management. The biopsy positively shifted clinician perceptions of the procedure's clinical management benefits, while perceptions of prognostic value decreased and diagnostic ratings remained unchanged. Limitations: Our study did not have demographic data of clinicians and could not provide insight into postbiopsy experiences for participants who did not respond to follow-up surveys. Conclusions: Participant perspectives of the personal implications of kidney biopsy can be integrated into shared decision-making between clinicians and patients. Enhanced biopsy reports and interactions between nephrologists and pathologists could augment the management and prognostic value of kidney biopsies. Plain-language summary: The utility of kidney biopsy is debated among clinicians, and patients' perspectives are even less explored. To address these gaps, we synthesized perspectives from clinicians and patient participants of the Kidney Precision Medicine Project (KPMP). Both before and after biopsy, clinicians were surveyed on how the procedure affected their clinical management, diagnosis, and prognosis. After biopsy, participants shared how the procedure affected their diagnosis, medication, and lifestyle changes. Clinicians and patients shared an appreciation for the biopsy's impact on medical management but diverged in their takeaways on diagnosis and prognosis. These findings highlight the need for greater collaboration between patients and clinicians, particularly as they navigate shared decision-making when considering kidney biopsy.
Language	English
Publishing date	2023-08-05
Publishing country	United States
Document type	Journal Article
ISSN	2590-0595
ISSN (online)	2590-0595
DOI	10.1016/j.xkme.2023.100707
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Article ; Online: Improving Kidney Disease Research in the Black Community: The Essential Role of Black Voices in the APOLLO Study.

Iltis, Ana S / Conell, Alexis D / Cooper, Lori A / Gee, Patrick O / Jefferson, Nichole M / Johnson, Heather A / Kingston, Giftay Myah / Roberts, Glenda V / Scott, Norman / Smith, Angenetta / Waddy, Salina P / Woodard, Leslie / DuBois, James M

American journal of kidney diseases : the official journal of the National Kidney Foundation

2021 Volume 79, Issue 5, Page(s) 750–753

MeSH term(s)	Blacks ; Female ; Humans ; Kidney Diseases ; Male
Language	English
Publishing date	2021-10-12
Publishing country	United States
Document type	Editorial ; Research Support, N.I.H., Extramural
ZDB-ID	604539-x
ISSN	1523-6838 ; 0272-6386
ISSN (online)	1523-6838
ISSN	0272-6386
DOI	10.1053/j.ajkd.2021.09.006
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Zs.A 1669: Show issues			Location: Je nach Verfügbarkeit (siehe Angabe bei Bestand) bis Jg. 1994: Bestellungen von Artikeln über das Online-Bestellformular Jg. 1995 - 2021: Lesesall (1.OG) ab Jg. 2022: Lesesaal (EG)
Zs.MO 468: Show issues

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Article ; Online: Participant Experience with Protocol Research Kidney Biopsies in the Kidney Precision Medicine Project.

Victoria-Castro, Angela M / Corona-Villalobos, Celia P / Xu, Alan Y / Onul, Ingrid / Huynh, Courtney / Chen, Sarah W / Ugwuowo, Ugochukwu / Sarkisova, Natalya / Dighe, Ashveena L / Blank, Kristina N / Blanc, Victoria M / Rose, Michael P / Himmelfarb, Jonathan / de Boer, Ian H / Tuttle, Katherine R / Roberts, Glenda V

Clinical journal of the American Society of Nephrology : CJASN

2023

Abstract: Background: Kidney biopsies are procedures commonly performed in clinical nephrology and are increasingly used in research. In this study we aimed to evaluate the experiences of participants who underwent research kidney biopsies in the Kidney Precision ...

Abstract	Background: Kidney biopsies are procedures commonly performed in clinical nephrology and are increasingly used in research. In this study we aimed to evaluate the experiences of participants who underwent research kidney biopsies in the Kidney Precision Medicine Project (KPMP). Methods: KPMP research participants with acute kidney injury (AKI) or chronic kidney disease (CKD) were enrolled at nine recruitment sites in the United States between September 2019 to January 2023. At 28 days post-biopsy, participants were invited to complete a survey to share their experiences, including: motivation to participate in research; comprehension of informed consent; pain and anxiety during and after the biopsy procedure; overall satisfaction with KPMP participation; and impact of the study on their lives. The survey was developed in collaboration with the KPMP Community Engagement Committee and the Institute of Translational Health Sciences at the University of Washington. Results: 111 participants completed the survey, 23 enrolled for AKI and 88 for CKD. Median age was 61 (IQR 48-67) years, 43% were women, 28% were Black, and 18% were of Hispanic ethnicity. Survey respondents most commonly joined KPMP to help future patients (59%). The consent form was understood by 99% and 97% recognized their important role in the study. Pain during the biopsy was reported by 50%, at a median level of 1 (IQR 0-3) on a 0-10 scale. Anxiety during the biopsy was described by 64% at a median level of 3 (IQR 1-5) on a 0-10 scale. More than half conveyed that KPMP participation impacted their diet, physical activity, and how they think about kidney disease. Conclusions: KPMP survey respondents were most commonly motivated to participate in research protocol kidney biopsies by altruism, with excellent understanding of the informed consent process.
Language	English
Publishing date	2023-10-23
Publishing country	United States
Document type	Journal Article
ZDB-ID	2226665-3
ISSN	1555-905X ; 1555-9041
ISSN (online)	1555-905X
ISSN	1555-9041
DOI	10.2215/CJN.0000000000000334
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Article ; Online: Patient perspectives and involvement in precision medicine research.

Tuttle, Katherine R / Bebiak, Jack / Brown, Keith / Campbell, Catherine / Dighe, Ashveena / Hyashi, Lynda / Jefferson, Nichole / Roberts, Glenda V / Stutzke, Christy / Knight, Richard

Kidney international

2021 Volume 99, Issue 3, Page(s) 511–514

Abstract: The Kidney Precision Medicine Project will advance understanding of chronic kidney disease attributed to diabetes or hypertension and acute kidney injury through a protocol kidney biopsy used for deep phenotyping with state-of-the-art methodology. To ... ...

Abstract	The Kidney Precision Medicine Project will advance understanding of chronic kidney disease attributed to diabetes or hypertension and acute kidney injury through a protocol kidney biopsy used for deep phenotyping with state-of-the-art methodology. To guide scientific inquiry toward clinically meaningful benefit, patients are equal partners for priority setting, study design and conduct, and dissemination of findings. Patients from stakeholder organizations, recruitment sites, tissue interrogation sites, and the Central Hub are represented on the Community Engagement Committee. This unique collaboration between patients and scientists has set a new standard for inclusion in precision medicine research.
MeSH term(s)	Acute Kidney Injury ; Humans ; Kidney ; Precision Medicine ; Renal Insufficiency, Chronic/diagnosis ; Renal Insufficiency, Chronic/therapy ; Research Design
Language	English
Publishing date	2021-02-18
Publishing country	United States
Document type	Editorial
ZDB-ID	120573-0
ISSN	1523-1755 ; 0085-2538
ISSN (online)	1523-1755
ISSN	0085-2538
DOI	10.1016/j.kint.2020.10.036
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Article ; Online: Diagnosis, Education, and Care of Patients with

Freedman, Barry I / Burke, Wylie / Divers, Jasmin / Eberhard, Lucy / Gadegbeku, Crystal A / Gbadegesin, Rasheed / Hall, Michael E / Jones-Smith, Tiffany / Knight, Richard / Kopp, Jeffrey B / Kovesdy, Csaba P / Norris, Keith C / Olabisi, Opeyemi A / Roberts, Glenda V / Sedor, John R / Blacksher, Erika

Journal of the American Society of Nephrology : JASN

2021 Volume 32, Issue 7, Page(s) 1765–1778

Abstract: Background: APOL1: Methods: A multidisciplinary, racially diverse group of 14 experts and patient advocates participated in a Delphi consensus process to establish practical guidance for clinicians caring for patients who may have : Results: The ... ...

Abstract	Background: APOL1 Methods: A multidisciplinary, racially diverse group of 14 experts and patient advocates participated in a Delphi consensus process to establish practical guidance for clinicians caring for patients who may have Results: The consensus group agreed on 55 consensus statements covering such topics as demographic and clinical factors that suggest a patient has Conclusions: A multidisciplinary group of experts and patient advocates defined consensus-based guidance on the care of patients who may have
Language	English
Publishing date	2021-04-14
Publishing country	United States
Document type	Journal Article
ZDB-ID	1085942-1
ISSN	1533-3450 ; 1046-6673
ISSN (online)	1533-3450
ISSN	1046-6673
DOI	10.1681/ASN.2020101399
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Article ; Online: Reassessing the Inclusion of Race in Diagnosing Kidney Diseases: An Interim Report from the NKF-ASN Task Force.

Delgado, Cynthia / Baweja, Mukta / Burrows, Nilka Ríos / Crews, Deidra C / Eneanya, Nwamaka D / Gadegbeku, Crystal A / Inker, Lesley A / Mendu, Mallika L / Miller, W Greg / Moxey-Mims, Marva M / Roberts, Glenda V / St Peter, Wendy L / Warfield, Curtis / Powe, Neil R

Journal of the American Society of Nephrology : JASN

2021 Volume 32, Issue 6, Page(s) 1305–1317

Abstract: For almost two decades, equations that use serum creatinine, age, sex, and race to eGFR have included "race" as Black or non-Black. Given considerable evidence of disparities in health and healthcare delivery in African American communities, some regard ... ...

Abstract	For almost two decades, equations that use serum creatinine, age, sex, and race to eGFR have included "race" as Black or non-Black. Given considerable evidence of disparities in health and healthcare delivery in African American communities, some regard keeping a race term in GFR equations as a practice that differentially influences access to care and kidney transplantation. Others assert that race captures important non GFR determinants of serum creatinine and its removal from the calculation may perpetuate other disparities. The National Kidney Foundation (NKF) and American Society of Nephrology (ASN) established a task force in 2020 to reassess the inclusion of race in the estimation of GFR in the United States and its implications for diagnosis and subsequent management of patients with, or at risk for, kidney diseases. This interim report details the process, initial assessment of evidence, and values defined regarding the use of race to estimate GFR. We organized activities in phases: (
MeSH term(s)	Advisory Committees/organization & administration ; Glomerular Filtration Rate ; Health Status Disparities ; Healthcare Disparities ; Humans ; Kidney Diseases/diagnosis ; Kidney Diseases/ethnology ; Kidney Diseases/physiopathology ; Mathematical Concepts ; Race Factors ; United States/epidemiology ; Voluntary Health Agencies
Language	English
Publishing date	2021-04-09
Publishing country	United States
Document type	Journal Article
ZDB-ID	1085942-1
ISSN	1533-3450 ; 1046-6673
ISSN (online)	1533-3450
ISSN	1046-6673
DOI	10.1681/ASN.2021010039
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