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Clinical-Genetic Associations in the Prospective Huntington at Risk Observational Study (PHAROS): Implications for Clinical Trials.
Huntington Study Group PHAROS Investigators, Biglan KM, Shoulson I, Kieburtz K, Oakes D, Kayson E, Shinaman MA, Zhao H, Romer M, Young A, Hersch S, Penney J, Marder K, Paulsen J, Quaid K, Siemers E, Tanner C, Mallonee W, Suter G, Dubinsky R, Gray C, Nance M, Bundlie S, Radtke D, Kostyk S, Baic C, Caress J, Walker F, Hunt V, O'Neill C, Chouinard S, Factor S, Greenamyre T, Wood-Siverio C, Corey-Bloom J, Song D, Peavy G, Moskowitz C, Wesson M, Samii A, Bird T, Lipe H, Blindauer K, Marshall F, Zimmerman C, Goldstein J, Rosas D, Novak P, Caviness J, Adler C, Duffy A, Wheelock V, Tempkin T, Richman D, Seeberger L, Albin R, Chou KL, Racette B, Perlmutter JS, Perlman S, Bordelon Y, Martin W, Wieler M, Leavitt B, Raymond L, Decolongon J, Clarke L, Jankovic J, Hunter C, Hauser RA, Sanchez-Ramos J, Furtado S, Suchowersky O, Klimek ML, Guttman M, Sethna R, Feigin A, Cox M, Shannon B, Percy A, Dure L, Harrison M, Johnson W, Higgins D, Molho E, Nickerson C, Evans S, Hobson D, Singer C, Galvez-Jimenez N, Shannon K, Comella C, Ross C, Saint-Hilaire MH, Testa C, Rosenblatt A, Hogarth P, Weiner W, Como P, Kumar R, Cotto C, Stout J, Brocht A, Watts A, Eberly S, Weaver C, Foroud T, Gusella J, MacDonald M, Myers R, Fahn S, Shults C. Huntington Study Group PHAROS Investigators, et al. JAMA Neurol. 2016 Jan;73(1):102-10. doi: 10.1001/jamaneurol.2015.2736. JAMA Neurol. 2016. PMID: 26569098
In their own words: reports of stigma and genetic discrimination by people at risk for Huntington disease in the International RESPOND-HD study.
Williams JK, Erwin C, Juhl AR, Mengeling M, Bombard Y, Hayden MR, Quaid K, Shoulson I, Taylor S, Paulsen JS; I-RESPOND-HD Investigators of the Huntington Study Group. Williams JK, et al. Am J Med Genet B Neuropsychiatr Genet. 2010 Sep;153B(6):1150-9. doi: 10.1002/ajmg.b.31080. Am J Med Genet B Neuropsychiatr Genet. 2010. PMID: 20468062 Free PMC article.
Fear of health insurance loss among individuals at risk for Huntington disease.
Oster E, Dorsey ER, Bausch J, Shinaman A, Kayson E, Oakes D, Shoulson I, Quaid K; Huntington Study Group PHAROS Investigators. Oster E, et al. Am J Med Genet A. 2008 Aug 15;146A(16):2070-7. doi: 10.1002/ajmg.a.32422. Am J Med Genet A. 2008. PMID: 18627059 Free PMC article. Clinical Trial.
Relationships Among Apathy, Health-Related Quality of Life, and Function in Huntington's Disease.
Fritz NE, Boileau NR, Stout JC, Ready R, Perlmutter JS, Paulsen JS, Quaid K, Barton S, McCormack MK, Perlman SL, Carlozzi NE; Huntington Disease Quality of Life Site Investigators and Coordinators, University of Michigan, University of Iowa, Indiana University, Johns Hopkins University, University of California, Rutgers University, Piscataway, Washington University, Struthers Parkinson’s Center, Cleveland Clinic Foundation, University of California, Northwestern University. Fritz NE, et al. J Neuropsychiatry Clin Neurosci. 2018 Summer;30(3):194-201. doi: 10.1176/appi.neuropsych.17080173. Epub 2018 Mar 21. J Neuropsychiatry Clin Neurosci. 2018. PMID: 29558861 Free PMC article.
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