Evidence map›Paper›PMID 29725648›Full record

ArticleKidney international reports2018

NephCure Accelerating Cures Institute: A Multidisciplinary Consortium to Improve Care for Nephrotic Syndrome.

Debbie S Gipson, David T Selewski, Susan F Massengill, Mary Margaret Modes, Hailey Desmond, Lauren Lee, Elaine Kamil, Matthew R Elliott, Sharon G Adler, Gia Oh and 16 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Kidney international reports, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers.

0numbers the graph read from it
0cells of the map it votes in
12citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

12 citing papers in PubMed.

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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

26 authors.

Debbie S GipsonDivision of Nephrology, Department of Pediatrics and Communicable Diseases, C.S. Mott Children's Hospital, University of Michigan, Ann Arbor, Michigan, USA.
David T SelewskiDivision of Nephrology, Department of Pediatrics and Communicable Diseases, C.S. Mott Children's Hospital, University of Michigan, Ann Arbor, Michigan, USA.
Susan F MassengillDivision of Pediatric Nephrology, Levine Children's Hospital, Charlotte, North Carolina, USA.
Mary Margaret ModesLivonia, Michigan, USA.
Hailey DesmondDivision of Nephrology, Department of Pediatrics and Communicable Diseases, C.S. Mott Children's Hospital, University of Michigan, Ann Arbor, Michigan, USA.
Lauren LeeNephCure Kidney International, King of Prussia, Pennsylvania, USA.
Elaine KamilDivision of Pediatric Nephrology, Department of Pediatrics, Cedars-Sinai Medical Center, David Geffen School of Medicine at The University of California, Los Angeles, Los Angeles, California, USA.
Matthew R ElliottMetrolina Nephrology Associates, Charlotte, North Carolina, USA.
Sharon G AdlerLos Angeles Biomedical Research Institute at Harbor-UCLA Medical Center, Los Angeles, California, USA.
Gia OhDivision of Nephrology, Department of Pediatrics, Stanford University School of Medicine, Stanford, California, USA.
Richard A LafayetteDivision of Nephrology and Hypertension, Stanford University, Stanford, California, USA.
Patrick E GipsonDivision of Nephrology, Department of Pediatrics and Communicable Diseases, C.S. Mott Children's Hospital, University of Michigan, Ann Arbor, Michigan, USA.
Aditi SinhaDivision of Nephrology, Department of Pediatrics, All India Institute of Medical Sciences, Ansari Nagar, New Delhi, India.
Arvind BaggaDivision of Nephrology, Department of Pediatrics, All India Institute of Medical Sciences, Ansari Nagar, New Delhi, India.
Anne PesensonThe Polyclinic, Seattle, Washington, USA.
Cheryl CourtlandtDivision of Pediatric Nephrology, Levine Children's Hospital, Charlotte, North Carolina, USA.
Cathie SpinoDepartment of Biostatistics, School of Public Health, University of Michigan, Ann Arbor, Michigan, USA.
Richard EikstadtDivision of Nephrology, Department of Pediatrics and Communicable Diseases, C.S. Mott Children's Hospital, University of Michigan, Ann Arbor, Michigan, USA.
Renée PitterDivision of Nephrology, Department of Pediatrics and Communicable Diseases, C.S. Mott Children's Hospital, University of Michigan, Ann Arbor, Michigan, USA.
Samara AttallaDivision of Nephrology, Department of Pediatrics and Communicable Diseases, C.S. Mott Children's Hospital, University of Michigan, Ann Arbor, Michigan, USA.
Anne WaldoDivision of Nephrology, Department of Pediatrics and Communicable Diseases, C.S. Mott Children's Hospital, University of Michigan, Ann Arbor, Michigan, USA.
Richard WinnekerNephCure Kidney International, King of Prussia, Pennsylvania, USA.
Noelle E CarlozziDepartment of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, Michigan, USA.
Jonathan P TroostDivision of Nephrology, Department of Pediatrics and Communicable Diseases, C.S. Mott Children's Hospital, University of Michigan, Ann Arbor, Michigan, USA.
Irving SmoklerNephCure Kidney International, King of Prussia, Pennsylvania, USA.
Mark StoneNephCure Kidney International, King of Prussia, Pennsylvania, USA.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

introductionNephCure Accelerating Cures Institute (NACI) is a collaborative organization sponsored by NephCure Kidney International and the University of Michigan. The Institute is composed of 7 cores designed to improve treatment options and outcomes for patients with glomerular disease: Clinical Trials Network, Data Warehouse, Patient-Reported Outcomes (PRO) and Endpoints Consortium, Clinical Trials Consulting Team, Quality Initiatives, Education and Engagement, and Data Coordinating Center.

methodsThe Trials Network includes 22 community- and hospital-based nephrology practices, 14 of which are trial-only sites. Eight sites participate in the NACI Registry, and as of October 2017, 1054 patients are enrolled with diagnoses including but not limited to focal segmental glomerulosclerosis, minimal change disease, membranous nephropathy, IgA nephropathy, and childhood-onset nephrotic syndrome. By using electronic health record data extraction, robust and efficient clinical data are captured while minimizing the burden to site-based network staff.

resultsThe Data Warehouse includes her-extracted data from registry patients, PRO development data, and data from completed observational studies and clinical trials. The Clinical Trial Consulting Team provides support for trial design in rare diseases leveraging these data. The PRO and Endpoints Consortium develops shorter-term endpoints while capturing the patient-reported significance of interventions under study. The Quality Initiatives and Education/Engagement cores elevate the level of care for patients. The Data Coordinating Center manages the analysis and operations of the Institute.

conclusionBy engaging with patients, academia, industry, and patient advocate community representatives, including our Patient Advisory Board, NACI strives for better outcomes and treatments using evidence-based support for clinical trial design.

Indexed as

clinical trialselectronic health recordglomerular diseasenephrotic syndromepatient advisorypatient-reported outcomes

Identifiers

PMID29725648
PMCPMC5932133

What OpenQuestion holds

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LicenceCC BY-NC-ND
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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.