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

Network Program

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

Governing Knowledge Commons ◽

10.1093/acprof:oso/9780199972036.003.0006 ◽

2014 ◽

pp. 155-208 ◽

Cited By ~ 3

Author(s):

Can Cui

Keyword(s):

Clinical Research ◽

Rare Diseases ◽

Urea Cycle ◽

Research Network ◽

Urea Cycle Disorders ◽

Knowledge Commons ◽

Cycle Disorders

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 ◽

Patient Advocacy Groups

Enhancements to the Rare Diseases Clinical Research Network Contact Registry

Molecular Genetics and Metabolism ◽

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 ◽

The Rare Disease Clinical Research Network (RDCRN) and other rare disease related programs at the National Center for Advancing Translational Sciences (NCATS)

Mitochondrion ◽

10.1016/j.mito.2015.07.033 ◽

2015 ◽

Vol 24 ◽

pp. S9-S10

Author(s):

Philip J. Brooks

Keyword(s):

Clinical Research ◽

Rare Disease ◽

Research Network ◽

An overview of the rare diseases clinical research network

Molecular Genetics and Metabolism ◽

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 ◽

Patient Registries to Support Research in Rare Diseases – Experience from the Rare Diseases Clinical Research Network

Molecular Genetics and Metabolism ◽

10.1016/j.ymgme.2011.11.140 ◽

2012 ◽

Vol 105 (2) ◽

pp. S54

Author(s):

Rachel Richesson ◽

Denise Shereff ◽

Rebecca Sutphen ◽

Heather Guillette ◽

Kate Paulus ◽

...

Keyword(s):

Clinical Research ◽

Rare Diseases ◽

Research Network ◽

Patient Registries ◽

Support Research

This month at the NIH: NIDDK forms hepatotoxicity clinical research network

Gastroenterology ◽

10.1016/s0016-5085(03)01302-7 ◽

2003 ◽

Vol 125 (4) ◽

pp. 1008-1008

Author(s):

Stephen P. James

Keyword(s):

Clinical Research ◽

Research Network ◽

Use of the Asthma Control Questionnaire by the Asthma Clinical Research Network

European Respiratory Journal ◽

10.1183/09031936.00054711 ◽

2011 ◽

Vol 38 (5) ◽

pp. 1242-1242

Author(s):

M. J. Walter ◽

M. Castro ◽

E. Israel ◽

C. A. Sorkness ◽

Keyword(s):

Clinical Research ◽

Asthma Control ◽

Research Network ◽

Asthma Control Questionnaire ◽