Literature DB >> 16804140

Rare disease research gets boost.

Tracy Hampton.   

Abstract

Mesh：

Year:  2006        PMID： 16804140     DOI： 10.1001/jama.295.24.2836

Source DB:  PubMed          Journal:  JAMA        ISSN： 0098-7484            Impact factor:   56.272


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  17 in total

1.  Policy alternatives for treatments for rare diseases.

Authors:  Abbas H Panju; Chaim M Bell
Journal:  CMAJ       Date:  2010-07-12       Impact factor: 8.262

2.  Coverage of rare disease names in standard terminologies and implications for patients, providers, and research.

Authors:  Kin Wah Fung; Rachel Richesson; Olivier Bodenreider
Journal:  AMIA Annu Symp Proc       Date:  2014-11-14

3.  Comparing heterogeneous SNOMED CT coding of clinical research concepts by examining normalized expressions.

Authors:  James E Andrews; Timothy B Patrick; Rachel L Richesson; Hana Brown; Jeffrey P Krischer
Journal:  J Biomed Inform       Date:  2008-02-05       Impact factor: 6.317

4.  SNOMED CT coding variation and grouping for "other findings" in a longitudinal study on urea cycle disorders.

Authors:  Timothy B Patrick; Rachel Richesson; James E Andrews; Lillian C Folk
Journal:  AMIA Annu Symp Proc       Date:  2008-11-06

Review 5.  Formal representation of eligibility criteria: a literature review.

Authors:  Chunhua Weng; Samson W Tu; Ida Sim; Rachel Richesson
Journal:  J Biomed Inform       Date:  2009-12-23       Impact factor: 6.317

6.  An automated communication system in a contact registry for persons with rare diseases: scalable tools for identifying and recruiting clinical research participants.

Authors:  R L Richesson; H S Lee; D Cuthbertson; J Lloyd; K Young; J P Krischer
Journal:  Contemp Clin Trials       Date:  2008-09-07       Impact factor: 2.226

Review 7.  An automated standardized system for managing adverse events in clinical research networks.

Authors:  Rachel L Richesson; Jamie F Malloy; Kathleen Paulus; David Cuthbertson; Jeffrey P Krischer
Journal:  Drug Saf       Date:  2008       Impact factor: 5.606

8.  Methodology of clinical research in rare diseases: development of a research program in juvenile neuronal ceroid lipofuscinosis (JNCL) via creation of a patient registry and collaboration with patient advocates.

Authors:  Elisabeth A de Blieck; Erika F Augustine; Frederick J Marshall; Heather Adams; Jennifer Cialone; Leon Dure; Jennifer M Kwon; Nicole Newhouse; Katherine Rose; Paul G Rothberg; Amy Vierhile; Jonathan W Mink
Journal:  Contemp Clin Trials       Date:  2013-04-26       Impact factor: 2.226

9.  The Rare Diseases Clinical Research Network's organization and approach to observational research and health outcomes research.

Authors:  Jeffrey P Krischer; Rashmi Gopal-Srivastava; Stephen C Groft; David J Eckstein
Journal:  J Gen Intern Med       Date:  2014-08       Impact factor: 5.128

Review 10.  Disease registries and outcomes research in children: focus on lysosomal storage disorders.

Authors:  Simon Jones; Emma James; Suyash Prasad
Journal:  Paediatr Drugs       Date:  2011-02-01       Impact factor: 3.022
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