The Rare Diseases Clinical Research Network and the Urea Cycle Disorders Consortium as Nested Knowledge Commons

Transatlantic combined and comparative data analysis of 1095 patients with urea cycle disorders—A successful strategy for clinical research of rare diseases

Journal of Inherited Metabolic Disease ◽

10.1002/jimd.12031 ◽

2019 ◽

Vol 42 (1) ◽

pp. 93-106 ◽

Cited By ~ 12

Author(s):

Roland Posset ◽

Sven F. Garbade ◽

Nikolas Boy ◽

Alberto B. Burlina ◽

Carlo Dionisi‐Vici ◽

...

Keyword(s):

Data Analysis ◽

Clinical Research ◽

Rare Diseases ◽

Urea Cycle ◽

Comparative Data ◽

Urea Cycle Disorders ◽

Successful Strategy ◽

Transatlantic combined and comparative data analysis of 1095 patients with urea cycle disorders—a successful strategy for clinical research of rare diseases

Journal of Inherited Metabolic Disease ◽

10.1007/s10545-018-0222-z ◽

2018 ◽

Cited By ~ 2

Author(s):

Roland Posset ◽

◽

Sven F. Garbade ◽

Nikolas Boy ◽

Alberto B. Burlina ◽

...

Keyword(s):

Data Analysis ◽

Clinical Research ◽

Rare Diseases ◽

Urea Cycle ◽

Comparative Data ◽

Urea Cycle Disorders ◽

Successful Strategy ◽

Rare Diseases Clinical Research Network

AWHONN Lifelines ◽

10.1111/j.1552-6356.2004.tb00171.x ◽

2004 ◽

Vol 8 (1) ◽

pp. 63-64

Keyword(s):

Clinical Research ◽

Rare Diseases ◽

Research Network ◽

The partnership of patient advocacy groups and clinical investigators in the rare diseases clinical research network

Orphanet Journal of Rare Diseases ◽

10.1186/s13023-016-0445-8 ◽

2016 ◽

Vol 11 (1) ◽

Cited By ~ 22

Author(s):

Peter A. Merkel ◽

◽

Michele Manion ◽

Rashmi Gopal-Srivastava ◽

Stephen Groft ◽

...

Keyword(s):

Clinical Research ◽

Rare Diseases ◽

Patient Advocacy ◽

Research Network ◽

Advocacy Groups ◽

Clinical Research Network ◽

Patient Advocacy Groups

Enhancements to the Rare Diseases Clinical Research Network Contact Registry

10.1016/j.ymgme.2017.12.410 ◽

2018 ◽

Vol 123 (2) ◽

pp. S148

Author(s):

Miranda N. Williams ◽

Jeffrey P. Kirscher

Keyword(s):

Clinical Research ◽

Rare Diseases ◽

Research Network ◽

The Rare Diseases Clinical Research Network Contact Registry update: Features and functionality

Contemporary Clinical Trials ◽

10.1016/j.cct.2012.02.012 ◽

2012 ◽

Vol 33 (4) ◽

pp. 647-656 ◽

Cited By ~ 27

Author(s):

Rachel L. Richesson ◽

Rebecca Sutphen ◽

Denise Shereff ◽

Jeffrey P. Krischer

Keyword(s):

Clinical Research ◽

Rare Diseases ◽

Research Network ◽

Establishing a consortium for the study of rare diseases: The Urea Cycle Disorders Consortium

10.1016/j.ymgme.2010.01.014 ◽

2010 ◽

Vol 100 ◽

pp. S97-S105 ◽

Cited By ~ 50

Author(s):

Jennifer Seminara ◽

Mendel Tuchman ◽

Lauren Krivitzky ◽

Jeffrey Krischer ◽

Hye-Seung Lee ◽

...

Keyword(s):

Rare Diseases ◽

Urea Cycle ◽

Urea Cycle Disorders ◽

A model for collaborative clinical research in rare diseases: experience from the Rare Disease Clinical Research Network program

Clinical Investigation ◽

10.4155/cli.13.101 ◽

2013 ◽

Vol 3 (11) ◽

pp. 1015-1021 ◽

Cited By ~ 7

Author(s):

Stephen C Groft ◽

Rashmi Gopal-Srivastava

Keyword(s):

Clinical Research ◽

Rare Disease ◽

Rare Diseases ◽

Research Network ◽

Clinical Research Network ◽

Network Program

On the Creation, Utility and Sustaining of Rare Diseases Research Networks: Lessons learned from the Urea Cycle Disorders Consortium, the Japanese Urea Cycle Disorders Consortium and the European Registry and Network for Intoxication Type Metabolic Diseases

10.1016/j.ymgme.2014.09.002 ◽

2014 ◽

Vol 113 (1-2) ◽

pp. 105-108 ◽

Cited By ~ 7

Author(s):

Marshall L. Summar ◽

Fumio Endo ◽

Stefan Kölker

Keyword(s):

Rare Diseases ◽

Metabolic Diseases ◽

Urea Cycle ◽

Lessons Learned ◽

Urea Cycle Disorders ◽

Research Networks ◽

The Creation ◽

Cycle Disorders ◽

European Registry

An overview of the rare diseases clinical research network

10.1016/j.ymgme.2012.11.146 ◽

2013 ◽

Vol 108 (2) ◽

pp. S59

Author(s):

Renee Leduc ◽

Callyn Hall ◽

Denise Shereff ◽

Jennifer Lloyd ◽

Kenneth Young ◽

...

Keyword(s):

Clinical Research ◽

Rare Diseases ◽

Research Network ◽