A Remote Longitudinal Observational Study of Individuals at Genetic Risk for Parkinson Disease: Baseline Results.

Autor:	Jensen-Roberts S; Center for Health + Technology (S.J.-R., T.L.M., P.A., J.S., M.P., S.S., R.W., A.S., M.P.M., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; Department of Brain and Psychological Sciences (T.L.M.), Boston University, MA; Department of Neurology (P.A., B.V., M.P.M., K.B., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; 23andMe, Inc. (P.C., H.M.R., D.C., E.C.), Sunnyvale, CA; Department of Neurology (K.A.), Westchester Medical Center, Poughkeepsie, NY; USA Department of Biostatistics and Computational Biology (M.P.M.), University of Rochester Medical Center, NY; Department of Neurology (R.N.A.), Columbia University, New York; Eli Lilly and Company (K.B.), Indianapolis, IN; Weill Institute for Neurosciences (C.T.), University of California, San Francisco; Valley Oaks Health (R.W.-E.), Lafayette, IN; and Department of Neurology and Neurogenetics (E.F.A.), Kennedy Krieger Institute, Baltimore, MD., Myers TL; Center for Health + Technology (S.J.-R., T.L.M., P.A., J.S., M.P., S.S., R.W., A.S., M.P.M., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; Department of Brain and Psychological Sciences (T.L.M.), Boston University, MA; Department of Neurology (P.A., B.V., M.P.M., K.B., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; 23andMe, Inc. (P.C., H.M.R., D.C., E.C.), Sunnyvale, CA; Department of Neurology (K.A.), Westchester Medical Center, Poughkeepsie, NY; USA Department of Biostatistics and Computational Biology (M.P.M.), University of Rochester Medical Center, NY; Department of Neurology (R.N.A.), Columbia University, New York; Eli Lilly and Company (K.B.), Indianapolis, IN; Weill Institute for Neurosciences (C.T.), University of California, San Francisco; Valley Oaks Health (R.W.-E.), Lafayette, IN; and Department of Neurology and Neurogenetics (E.F.A.), Kennedy Krieger Institute, Baltimore, MD., Auinger P; Center for Health + Technology (S.J.-R., T.L.M., P.A., J.S., M.P., S.S., R.W., A.S., M.P.M., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; Department of Brain and Psychological Sciences (T.L.M.), Boston University, MA; Department of Neurology (P.A., B.V., M.P.M., K.B., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; 23andMe, Inc. (P.C., H.M.R., D.C., E.C.), Sunnyvale, CA; Department of Neurology (K.A.), Westchester Medical Center, Poughkeepsie, NY; USA Department of Biostatistics and Computational Biology (M.P.M.), University of Rochester Medical Center, NY; Department of Neurology (R.N.A.), Columbia University, New York; Eli Lilly and Company (K.B.), Indianapolis, IN; Weill Institute for Neurosciences (C.T.), University of California, San Francisco; Valley Oaks Health (R.W.-E.), Lafayette, IN; and Department of Neurology and Neurogenetics (E.F.A.), Kennedy Krieger Institute, Baltimore, MD., Cannon P; Center for Health + Technology (S.J.-R., T.L.M., P.A., J.S., M.P., S.S., R.W., A.S., M.P.M., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; Department of Brain and Psychological Sciences (T.L.M.), Boston University, MA; Department of Neurology (P.A., B.V., M.P.M., K.B., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; 23andMe, Inc. (P.C., H.M.R., D.C., E.C.), Sunnyvale, CA; Department of Neurology (K.A.), Westchester Medical Center, Poughkeepsie, NY; USA Department of Biostatistics and Computational Biology (M.P.M.), University of Rochester Medical Center, NY; Department of Neurology (R.N.A.), Columbia University, New York; Eli Lilly and Company (K.B.), Indianapolis, IN; Weill Institute for Neurosciences (C.T.), University of California, San Francisco; Valley Oaks Health (R.W.-E.), Lafayette, IN; and Department of Neurology and Neurogenetics (E.F.A.), Kennedy Krieger Institute, Baltimore, MD., Rowbotham HM; Center for Health + Technology (S.J.-R., T.L.M., P.A., J.S., M.P., S.S., R.W., A.S., M.P.M., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; Department of Brain and Psychological Sciences (T.L.M.), Boston University, MA; Department of Neurology (P.A., B.V., M.P.M., K.B., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; 23andMe, Inc. (P.C., H.M.R., D.C., E.C.), Sunnyvale, CA; Department of Neurology (K.A.), Westchester Medical Center, Poughkeepsie, NY; USA Department of Biostatistics and Computational Biology (M.P.M.), University of Rochester Medical Center, NY; Department of Neurology (R.N.A.), Columbia University, New York; Eli Lilly and Company (K.B.), Indianapolis, IN; Weill Institute for Neurosciences (C.T.), University of California, San Francisco; Valley Oaks Health (R.W.-E.), Lafayette, IN; and Department of Neurology and Neurogenetics (E.F.A.), Kennedy Krieger Institute, Baltimore, MD., Coker D; Center for Health + Technology (S.J.-R., T.L.M., P.A., J.S., M.P., S.S., R.W., A.S., M.P.M., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; Department of Brain and Psychological Sciences (T.L.M.), Boston University, MA; Department of Neurology (P.A., B.V., M.P.M., K.B., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; 23andMe, Inc. (P.C., H.M.R., D.C., E.C.), Sunnyvale, CA; Department of Neurology (K.A.), Westchester Medical Center, Poughkeepsie, NY; USA Department of Biostatistics and Computational Biology (M.P.M.), University of Rochester Medical Center, NY; Department of Neurology (R.N.A.), Columbia University, New York; Eli Lilly and Company (K.B.), Indianapolis, IN; Weill Institute for Neurosciences (C.T.), University of California, San Francisco; Valley Oaks Health (R.W.-E.), Lafayette, IN; and Department of Neurology and Neurogenetics (E.F.A.), Kennedy Krieger Institute, Baltimore, MD., Chanoff E; Center for Health + Technology (S.J.-R., T.L.M., P.A., J.S., M.P., S.S., R.W., A.S., M.P.M., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; Department of Brain and Psychological Sciences (T.L.M.), Boston University, MA; Department of Neurology (P.A., B.V., M.P.M., K.B., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; 23andMe, Inc. (P.C., H.M.R., D.C., E.C.), Sunnyvale, CA; Department of Neurology (K.A.), Westchester Medical Center, Poughkeepsie, NY; USA Department of Biostatistics and Computational Biology (M.P.M.), University of Rochester Medical Center, NY; Department of Neurology (R.N.A.), Columbia University, New York; Eli Lilly and Company (K.B.), Indianapolis, IN; Weill Institute for Neurosciences (C.T.), University of California, San Francisco; Valley Oaks Health (R.W.-E.), Lafayette, IN; and Department of Neurology and Neurogenetics (E.F.A.), Kennedy Krieger Institute, Baltimore, MD., Soto J; Center for Health + Technology (S.J.-R., T.L.M., P.A., J.S., M.P., S.S., R.W., A.S., M.P.M., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; Department of Brain and Psychological Sciences (T.L.M.), Boston University, MA; Department of Neurology (P.A., B.V., M.P.M., K.B., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; 23andMe, Inc. (P.C., H.M.R., D.C., E.C.), Sunnyvale, CA; Department of Neurology (K.A.), Westchester Medical Center, Poughkeepsie, NY; USA Department of Biostatistics and Computational Biology (M.P.M.), University of Rochester Medical Center, NY; Department of Neurology (R.N.A.), Columbia University, New York; Eli Lilly and Company (K.B.), Indianapolis, IN; Weill Institute for Neurosciences (C.T.), University of California, San Francisco; Valley Oaks Health (R.W.-E.), Lafayette, IN; and Department of Neurology and Neurogenetics (E.F.A.), Kennedy Krieger Institute, Baltimore, MD., Pawlik M; Center for Health + Technology (S.J.-R., T.L.M., P.A., J.S., M.P., S.S., R.W., A.S., M.P.M., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; Department of Brain and Psychological Sciences (T.L.M.), Boston University, MA; Department of Neurology (P.A., B.V., M.P.M., K.B., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; 23andMe, Inc. (P.C., H.M.R., D.C., E.C.), Sunnyvale, CA; Department of Neurology (K.A.), Westchester Medical Center, Poughkeepsie, NY; USA Department of Biostatistics and Computational Biology (M.P.M.), University of Rochester Medical Center, NY; Department of Neurology (R.N.A.), Columbia University, New York; Eli Lilly and Company (K.B.), Indianapolis, IN; Weill Institute for Neurosciences (C.T.), University of California, San Francisco; Valley Oaks Health (R.W.-E.), Lafayette, IN; and Department of Neurology and Neurogenetics (E.F.A.), Kennedy Krieger Institute, Baltimore, MD., Amodeo K; Center for Health + Technology (S.J.-R., T.L.M., P.A., J.S., M.P., S.S., R.W., A.S., M.P.M., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; Department of Brain and Psychological Sciences (T.L.M.), Boston University, MA; Department of Neurology (P.A., B.V., M.P.M., K.B., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; 23andMe, Inc. (P.C., H.M.R., D.C., E.C.), Sunnyvale, CA; Department of Neurology (K.A.), Westchester Medical Center, Poughkeepsie, NY; USA Department of Biostatistics and Computational Biology (M.P.M.), University of Rochester Medical Center, NY; Department of Neurology (R.N.A.), Columbia University, New York; Eli Lilly and Company (K.B.), Indianapolis, IN; Weill Institute for Neurosciences (C.T.), University of California, San Francisco; Valley Oaks Health (R.W.-E.), Lafayette, IN; and Department of Neurology and Neurogenetics (E.F.A.), Kennedy Krieger Institute, Baltimore, MD., Sharma S; Center for Health + Technology (S.J.-R., T.L.M., P.A., J.S., M.P., S.S., R.W., A.S., M.P.M., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; Department of Brain and Psychological Sciences (T.L.M.), Boston University, MA; Department of Neurology (P.A., B.V., M.P.M., K.B., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; 23andMe, Inc. (P.C., H.M.R., D.C., E.C.), Sunnyvale, CA; Department of Neurology (K.A.), Westchester Medical Center, Poughkeepsie, NY; USA Department of Biostatistics and Computational Biology (M.P.M.), University of Rochester Medical Center, NY; Department of Neurology (R.N.A.), Columbia University, New York; Eli Lilly and Company (K.B.), Indianapolis, IN; Weill Institute for Neurosciences (C.T.), University of California, San Francisco; Valley Oaks Health (R.W.-E.), Lafayette, IN; and Department of Neurology and Neurogenetics (E.F.A.), Kennedy Krieger Institute, Baltimore, MD., Valdovinos B; Center for Health + Technology (S.J.-R., T.L.M., P.A., J.S., M.P., S.S., R.W., A.S., M.P.M., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; Department of Brain and Psychological Sciences (T.L.M.), Boston University, MA; Department of Neurology (P.A., B.V., M.P.M., K.B., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; 23andMe, Inc. (P.C., H.M.R., D.C., E.C.), Sunnyvale, CA; Department of Neurology (K.A.), Westchester Medical Center, Poughkeepsie, NY; USA Department of Biostatistics and Computational Biology (M.P.M.), University of Rochester Medical Center, NY; Department of Neurology (R.N.A.), Columbia University, New York; Eli Lilly and Company (K.B.), Indianapolis, IN; Weill Institute for Neurosciences (C.T.), University of California, San Francisco; Valley Oaks Health (R.W.-E.), Lafayette, IN; and Department of Neurology and Neurogenetics (E.F.A.), Kennedy Krieger Institute, Baltimore, MD., Wilson R; Center for Health + Technology (S.J.-R., T.L.M., P.A., J.S., M.P., S.S., R.W., A.S., M.P.M., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; Department of Brain and Psychological Sciences (T.L.M.), Boston University, MA; Department of Neurology (P.A., B.V., M.P.M., K.B., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; 23andMe, Inc. (P.C., H.M.R., D.C., E.C.), Sunnyvale, CA; Department of Neurology (K.A.), Westchester Medical Center, Poughkeepsie, NY; USA Department of Biostatistics and Computational Biology (M.P.M.), University of Rochester Medical Center, NY; Department of Neurology (R.N.A.), Columbia University, New York; Eli Lilly and Company (K.B.), Indianapolis, IN; Weill Institute for Neurosciences (C.T.), University of California, San Francisco; Valley Oaks Health (R.W.-E.), Lafayette, IN; and Department of Neurology and Neurogenetics (E.F.A.), Kennedy Krieger Institute, Baltimore, MD., Sarkar A; Center for Health + Technology (S.J.-R., T.L.M., P.A., J.S., M.P., S.S., R.W., A.S., M.P.M., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; Department of Brain and Psychological Sciences (T.L.M.), Boston University, MA; Department of Neurology (P.A., B.V., M.P.M., K.B., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; 23andMe, Inc. (P.C., H.M.R., D.C., E.C.), Sunnyvale, CA; Department of Neurology (K.A.), Westchester Medical Center, Poughkeepsie, NY; USA Department of Biostatistics and Computational Biology (M.P.M.), University of Rochester Medical Center, NY; Department of Neurology (R.N.A.), Columbia University, New York; Eli Lilly and Company (K.B.), Indianapolis, IN; Weill Institute for Neurosciences (C.T.), University of California, San Francisco; Valley Oaks Health (R.W.-E.), Lafayette, IN; and Department of Neurology and Neurogenetics (E.F.A.), Kennedy Krieger Institute, Baltimore, MD., McDermott MP; Center for Health + Technology (S.J.-R., T.L.M., P.A., J.S., M.P., S.S., R.W., A.S., M.P.M., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; Department of Brain and Psychological Sciences (T.L.M.), Boston University, MA; Department of Neurology (P.A., B.V., M.P.M., K.B., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; 23andMe, Inc. (P.C., H.M.R., D.C., E.C.), Sunnyvale, CA; Department of Neurology (K.A.), Westchester Medical Center, Poughkeepsie, NY; USA Department of Biostatistics and Computational Biology (M.P.M.), University of Rochester Medical Center, NY; Department of Neurology (R.N.A.), Columbia University, New York; Eli Lilly and Company (K.B.), Indianapolis, IN; Weill Institute for Neurosciences (C.T.), University of California, San Francisco; Valley Oaks Health (R.W.-E.), Lafayette, IN; and Department of Neurology and Neurogenetics (E.F.A.), Kennedy Krieger Institute, Baltimore, MD., Alcalay RN; Center for Health + Technology (S.J.-R., T.L.M., P.A., J.S., M.P., S.S., R.W., A.S., M.P.M., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; Department of Brain and Psychological Sciences (T.L.M.), Boston University, MA; Department of Neurology (P.A., B.V., M.P.M., K.B., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; 23andMe, Inc. (P.C., H.M.R., D.C., E.C.), Sunnyvale, CA; Department of Neurology (K.A.), Westchester Medical Center, Poughkeepsie, NY; USA Department of Biostatistics and Computational Biology (M.P.M.), University of Rochester Medical Center, NY; Department of Neurology (R.N.A.), Columbia University, New York; Eli Lilly and Company (K.B.), Indianapolis, IN; Weill Institute for Neurosciences (C.T.), University of California, San Francisco; Valley Oaks Health (R.W.-E.), Lafayette, IN; and Department of Neurology and Neurogenetics (E.F.A.), Kennedy Krieger Institute, Baltimore, MD., Biglan K; Center for Health + Technology (S.J.-R., T.L.M., P.A., J.S., M.P., S.S., R.W., A.S., M.P.M., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; Department of Brain and Psychological Sciences (T.L.M.), Boston University, MA; Department of Neurology (P.A., B.V., M.P.M., K.B., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; 23andMe, Inc. (P.C., H.M.R., D.C., E.C.), Sunnyvale, CA; Department of Neurology (K.A.), Westchester Medical Center, Poughkeepsie, NY; USA Department of Biostatistics and Computational Biology (M.P.M.), University of Rochester Medical Center, NY; Department of Neurology (R.N.A.), Columbia University, New York; Eli Lilly and Company (K.B.), Indianapolis, IN; Weill Institute for Neurosciences (C.T.), University of California, San Francisco; Valley Oaks Health (R.W.-E.), Lafayette, IN; and Department of Neurology and Neurogenetics (E.F.A.), Kennedy Krieger Institute, Baltimore, MD., Kinel D; Center for Health + Technology (S.J.-R., T.L.M., P.A., J.S., M.P., S.S., R.W., A.S., M.P.M., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; Department of Brain and Psychological Sciences (T.L.M.), Boston University, MA; Department of Neurology (P.A., B.V., M.P.M., K.B., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; 23andMe, Inc. (P.C., H.M.R., D.C., E.C.), Sunnyvale, CA; Department of Neurology (K.A.), Westchester Medical Center, Poughkeepsie, NY; USA Department of Biostatistics and Computational Biology (M.P.M.), University of Rochester Medical Center, NY; Department of Neurology (R.N.A.), Columbia University, New York; Eli Lilly and Company (K.B.), Indianapolis, IN; Weill Institute for Neurosciences (C.T.), University of California, San Francisco; Valley Oaks Health (R.W.-E.), Lafayette, IN; and Department of Neurology and Neurogenetics (E.F.A.), Kennedy Krieger Institute, Baltimore, MD., Tanner C; Center for Health + Technology (S.J.-R., T.L.M., P.A., J.S., M.P., S.S., R.W., A.S., M.P.M., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; Department of Brain and Psychological Sciences (T.L.M.), Boston University, MA; Department of Neurology (P.A., B.V., M.P.M., K.B., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; 23andMe, Inc. (P.C., H.M.R., D.C., E.C.), Sunnyvale, CA; Department of Neurology (K.A.), Westchester Medical Center, Poughkeepsie, NY; USA Department of Biostatistics and Computational Biology (M.P.M.), University of Rochester Medical Center, NY; Department of Neurology (R.N.A.), Columbia University, New York; Eli Lilly and Company (K.B.), Indianapolis, IN; Weill Institute for Neurosciences (C.T.), University of California, San Francisco; Valley Oaks Health (R.W.-E.), Lafayette, IN; and Department of Neurology and Neurogenetics (E.F.A.), Kennedy Krieger Institute, Baltimore, MD., Winter-Evans R; Center for Health + Technology (S.J.-R., T.L.M., P.A., J.S., M.P., S.S., R.W., A.S., M.P.M., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; Department of Brain and Psychological Sciences (T.L.M.), Boston University, MA; Department of Neurology (P.A., B.V., M.P.M., K.B., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; 23andMe, Inc. (P.C., H.M.R., D.C., E.C.), Sunnyvale, CA; Department of Neurology (K.A.), Westchester Medical Center, Poughkeepsie, NY; USA Department of Biostatistics and Computational Biology (M.P.M.), University of Rochester Medical Center, NY; Department of Neurology (R.N.A.), Columbia University, New York; Eli Lilly and Company (K.B.), Indianapolis, IN; Weill Institute for Neurosciences (C.T.), University of California, San Francisco; Valley Oaks Health (R.W.-E.), Lafayette, IN; and Department of Neurology and Neurogenetics (E.F.A.), Kennedy Krieger Institute, Baltimore, MD., Augustine EF; Center for Health + Technology (S.J.-R., T.L.M., P.A., J.S., M.P., S.S., R.W., A.S., M.P.M., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; Department of Brain and Psychological Sciences (T.L.M.), Boston University, MA; Department of Neurology (P.A., B.V., M.P.M., K.B., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; 23andMe, Inc. (P.C., H.M.R., D.C., E.C.), Sunnyvale, CA; Department of Neurology (K.A.), Westchester Medical Center, Poughkeepsie, NY; USA Department of Biostatistics and Computational Biology (M.P.M.), University of Rochester Medical Center, NY; Department of Neurology (R.N.A.), Columbia University, New York; Eli Lilly and Company (K.B.), Indianapolis, IN; Weill Institute for Neurosciences (C.T.), University of California, San Francisco; Valley Oaks Health (R.W.-E.), Lafayette, IN; and Department of Neurology and Neurogenetics (E.F.A.), Kennedy Krieger Institute, Baltimore, MD., Holloway RG; Center for Health + Technology (S.J.-R., T.L.M., P.A., J.S., M.P., S.S., R.W., A.S., M.P.M., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; Department of Brain and Psychological Sciences (T.L.M.), Boston University, MA; Department of Neurology (P.A., B.V., M.P.M., K.B., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; 23andMe, Inc. (P.C., H.M.R., D.C., E.C.), Sunnyvale, CA; Department of Neurology (K.A.), Westchester Medical Center, Poughkeepsie, NY; USA Department of Biostatistics and Computational Biology (M.P.M.), University of Rochester Medical Center, NY; Department of Neurology (R.N.A.), Columbia University, New York; Eli Lilly and Company (K.B.), Indianapolis, IN; Weill Institute for Neurosciences (C.T.), University of California, San Francisco; Valley Oaks Health (R.W.-E.), Lafayette, IN; and Department of Neurology and Neurogenetics (E.F.A.), Kennedy Krieger Institute, Baltimore, MD., Dorsey ER; Center for Health + Technology (S.J.-R., T.L.M., P.A., J.S., M.P., S.S., R.W., A.S., M.P.M., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; Department of Brain and Psychological Sciences (T.L.M.), Boston University, MA; Department of Neurology (P.A., B.V., M.P.M., K.B., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; 23andMe, Inc. (P.C., H.M.R., D.C., E.C.), Sunnyvale, CA; Department of Neurology (K.A.), Westchester Medical Center, Poughkeepsie, NY; USA Department of Biostatistics and Computational Biology (M.P.M.), University of Rochester Medical Center, NY; Department of Neurology (R.N.A.), Columbia University, New York; Eli Lilly and Company (K.B.), Indianapolis, IN; Weill Institute for Neurosciences (C.T.), University of California, San Francisco; Valley Oaks Health (R.W.-E.), Lafayette, IN; and Department of Neurology and Neurogenetics (E.F.A.), Kennedy Krieger Institute, Baltimore, MD., Schneider RB; Center for Health + Technology (S.J.-R., T.L.M., P.A., J.S., M.P., S.S., R.W., A.S., M.P.M., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; Department of Brain and Psychological Sciences (T.L.M.), Boston University, MA; Department of Neurology (P.A., B.V., M.P.M., K.B., D.K., E.F.A., R.G.H., E.R.D., R.B.S.), University of Rochester Medical Center, NY; 23andMe, Inc. (P.C., H.M.R., D.C., E.C.), Sunnyvale, CA; Department of Neurology (K.A.), Westchester Medical Center, Poughkeepsie, NY; USA Department of Biostatistics and Computational Biology (M.P.M.), University of Rochester Medical Center, NY; Department of Neurology (R.N.A.), Columbia University, New York; Eli Lilly and Company (K.B.), Indianapolis, IN; Weill Institute for Neurosciences (C.T.), University of California, San Francisco; Valley Oaks Health (R.W.-E.), Lafayette, IN; and Department of Neurology and Neurogenetics (E.F.A.), Kennedy Krieger Institute, Baltimore, MD.
Jazyk:	angličtina
Zdroj:	Neurology. Genetics [Neurol Genet] 2022 Aug 11; Vol. 8 (5), pp. e200008. Date of Electronic Publication: 2022 Aug 11 (Print Publication: 2022).
DOI:	10.1212/NXG.0000000000200008
Abstrakt:	Background and Objectives: To recruit and characterize a national cohort of individuals who have a genetic variant ( LRRK2 G2019S) that increases risk of Parkinson disease (PD), assess participant satisfaction with a decentralized, remote research model, and evaluate interest in future clinical trials. Methods: In partnership with 23andMe, Inc., a personal genetics company, LRRK2 G2019S carriers with and without PD were recruited to participate in an ongoing 36-month decentralized, remote natural history study. We examined concordance between self-reported and clinician-determined PD diagnosis. We applied the Movement Disorder Society Prodromal Parkinson's Disease Criteria and asked investigators to identify concern for parkinsonism to distinguish participants with probable prodromal PD. We compared baseline characteristics of LRRK2 G2019S carriers with PD, with prodromal PD, and without PD. Results: Over 15 months, we enrolled 277 LRRK2 G2019S carriers from 34 states. At baseline, 60 had self-reported PD (mean [SD] age 67.8 years [8.4], 98% White, 52% female, 80% Ashkenazi Jewish, and 67% with a family history of PD), and 217 did not (mean [SD] age 53.7 years [15.1], 95% White, 59% female, 73% Ashkenazi Jewish, and 57% with a family history of PD). Agreement between self-reported and clinician-determined PD status was excellent (κ = 0.94, 95% confidence interval 0.89-0.99). Twenty-four participants had prodromal PD; 9 met criteria for probable prodromal PD and investigators identified concern for parkinsonism in 20 cases. Compared with those without prodromal PD, participants with prodromal PD were older (63.9 years [9.0] vs 51.9 years [15.1], p < 0.001), had higher modified Movement Disorders Society-Unified Parkinson's Disease Rating Scale motor scores (5.7 [4.3] vs 0.8 [2.1], p < 0.001), and had higher Scale for Outcomes in PD for Autonomic Symptoms scores (11.5 [6.2] vs 6.9 [5.7], p = 0.002). Two-thirds of participants enrolled were new to research, 97% were satisfied with the overall study, and 94% of those without PD would participate in future preventive clinical trials. Discussion: An entirely remote national cohort of LRRK2 G2019S carriers was recruited from a single site. This study will prospectively characterize a large LRRK2 G2019S cohort, refine a new model of clinical research, and engage new research participants willing to participate in future therapeutic trials. (Copyright © 2022 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of the American Academy of Neurology.)
Databáze:	MEDLINE
Externí odkaz:	Zobrazit plný text záznamu