Literature DB >> 34806973

From "Ought" to "Is": Surfacing Values in Patient and Family Advocacy in Rare Diseases.

Meghan C Halley1.   

Abstract

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Year:  2021        PMID： 34806973      PMCID： PMC8725198          DOI： 10.1080/15265161.2021.1996801

Source DB:  PubMed          Journal:  Am J Bioeth        ISSN： 1526-5161            Impact factor:   11.229


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  11 in total

1.  Which orphans will find a home? The rule of rescue in resource allocation for rare diseases.

Authors:  Emily A Largent; Steven D Pearson
Journal:  Hastings Cent Rep       Date:  2012 Jan-Feb       Impact factor: 2.683

2.  Facilitating Both Evidence and Access: Improving FDA's Accelerated Approval and Expanded Access Pathways.

Authors:  Holly Fernandez Lynch; Alison Bateman-House
Journal:  J Law Med Ethics       Date:  2020-06       Impact factor: 1.718

3.  Civic Engagement, Autism and Deliberative Democracy: Prioritizing the Inclusion of Marginalized Perspectives.

Authors:  Holly K Tabor
Journal:  Am J Bioeth       Date:  2020-05       Impact factor: 11.229

4.  Federal Right-to-Try Legislation - Threatening the FDA's Public Health Mission.

Authors:  Steven Joffe; Holly Fernandez Lynch
Journal:  N Engl J Med       Date:  2018-01-10       Impact factor: 91.245

Review 5.  Advocacy groups and their role in rare diseases research.

Authors:  Mary Dunkle; Wayne Pines; Peter L Saltonstall
Journal:  Adv Exp Med Biol       Date:  2010       Impact factor: 2.622

Review 6.  Rare diseases - avoiding misperceptions and establishing realities: the need for reliable epidemiological data.

Authors:  Stephen C Groft; Manuel Posada de la Paz
Journal:  Adv Exp Med Biol       Date:  2010       Impact factor: 2.622

7.  Another Cautionary Lesson from COVID Research.

Authors:  Christine Grady
Journal:  Am J Bioeth       Date:  2021-12       Impact factor: 11.229

8.  Physician Responsibility to Discuss Palliative Unproven Therapies With Out-of-Option Patients.

Authors:  Omar Kawam; Jon C Tilburt; Zubin Master
Journal:  Am J Bioeth       Date:  2021-12       Impact factor: 11.229

9.  Decisions on Innovation or Research for Devastating Disease.

Authors:  M H Andreae; L D Shah; V Shepherd; M Sheehan; H S Sacks; R Rhodes
Journal:  Am J Bioeth       Date:  2021-12       Impact factor: 14.676

10.  "It seems like COVID-19 now is the only disease present on Earth": living with a rare or undiagnosed disease during the COVID-19 pandemic.

Authors:  Meghan C Halley; Talia Stanley; Jay Maturi; Aaron J Goldenberg; Jonathan A Bernstein; Matthew T Wheeler; Holly K Tabor
Journal:  Genet Med       Date:  2021-01-08       Impact factor: 8.822
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  1 in total

1.  Aspiring to Reasonableness in Accelerated Approval: Anticipating and Avoiding the Next Aducanumab.

Authors:  Emily A Largent; Andrew Peterson; Jason Karlawish; Holly Fernandez Lynch
Journal:  Drugs Aging       Date:  2022-06-13       Impact factor: 4.271
  1 in total

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