Measuring health-related quality of life in children with suspected genetic conditions: validation of the PedsQL proxy-report versions.

Autor: Smith HS; Department of Population Medicine, Harvard Medical School, 401 Park Drive, Suite 401, Boston, MA, 02215, USA. hadley.smith@hphci.harvard.edu., Leo M; Kaiser Permanente Center for Health Research, Portland, OR, USA., Goddard K; Department of Translational and Applied Genomics (TAG), Kaiser Permanente Center for Health Research, Portland, OR, USA., Muessig K; Department of Translational and Applied Genomics (TAG), Kaiser Permanente Center for Health Research, Portland, OR, USA., Angelo F; Institute for Sexual and Gender Minority Health and Wellbeing, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA., Knight S; Department of Internal Medicine, Division of Epidemiology, University of Utah, Salt Lake City, UT, USA., Outram S; Program in Bioethics, University of California San Francisco, San Francisco, CA, USA., Kelly NR; Department of Pediatrics, Division of Pediatric Genetic Medicine, Children's Hospital at Montefiore/Montefiore Medical Center/Albert Einstein College of Medicine, Bronx, NY, USA., Rini C; Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, The Robert H. Lurie Comprehensive Cancer Center of Northwestern University, Chicago, IL, USA.

Publikováno v: Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation [Qual Life Res] 2024 Jun; Vol. 33 (6), pp. 1541-1553. Date of Electronic Publication: 2024 Mar 12.

Author Correction: Diagnostic yield of pediatric and prenatal exome sequencing in a diverse population.

Autor: Slavotinek A; Department of Pediatrics, University of California, San Francisco, San Francisco, CA, USA. anne.slavotinek@cchmc.org.; Institute for Human Genetics, University of California San Francisco, San Francisco, CA, USA. anne.slavotinek@cchmc.org., Rego S; Department of Pediatrics, University of California, San Francisco, San Francisco, CA, USA.; Institute for Human Genetics, University of California San Francisco, San Francisco, CA, USA., Sahin-Hodoglugil N; Institute for Human Genetics, University of California San Francisco, San Francisco, CA, USA., Kvale M; Institute for Human Genetics, University of California San Francisco, San Francisco, CA, USA.; Department of Epidemiology & Biostatistics, University of California San Francisco, San Francisco, CA, USA., Lianoglou B; Department of Surgery, University of California, San Francisco, San Francisco, CA, USA., Yip T; Department of Pediatrics, University of California, San Francisco, San Francisco, CA, USA.; Institute for Human Genetics, University of California San Francisco, San Francisco, CA, USA., Hoban H; Department of Pediatrics, University of California, San Francisco, San Francisco, CA, USA., Outram S; Institute for Health & Aging, School of Nursing, University of California San Francisco, San Francisco, CA, USA., Anguiano B; Institute for Human Genetics, University of California San Francisco, San Francisco, CA, USA.; Institute for Health & Aging, School of Nursing, University of California San Francisco, San Francisco, CA, USA., Chen F; Institute for Human Genetics, University of California San Francisco, San Francisco, CA, USA., Michelson J; Institute of Human Nutrition, Columbia University Medical Center, New York, NY, USA., Cilio RM; Division of Pediatric Neurology, Department of Pediatrics, University of Louvain, Brussels, Belgium., Curry C; Genetic Medicine, University of California, San Francisco, Fresno, CA, USA., Gallagher RC; Department of Pediatrics, University of California, San Francisco, San Francisco, CA, USA.; Institute for Human Genetics, University of California San Francisco, San Francisco, CA, USA., Gardner M; Department of Neurology, UCSF Benioff Children's Hospital Oakland, Oakland, CA, USA., Kuperman R; Department of Neurology, UCSF Benioff Children's Hospital Oakland, Oakland, CA, USA.; Eysz, Inc, Piedmont, CA, USA., Mendelsohn B; Division of Genetics, Kaiser Permanente Oakland Medical Center, Oakland, CA, USA., Sherr E; Division of Child Neurology, Department of Neurology, University of California, San Francisco, San Francisco, CA, USA., Shieh J; Department of Pediatrics, University of California, San Francisco, San Francisco, CA, USA.; Institute for Human Genetics, University of California San Francisco, San Francisco, CA, USA., Strober J; Division of Child Neurology, Department of Neurology, University of California, San Francisco, San Francisco, CA, USA., Tam A; Department of Pediatrics, University of California, San Francisco, San Francisco, CA, USA., Tenney J; Department of Pediatrics, University of California, San Francisco, San Francisco, CA, USA., Weiss W; Division of Child Neurology, Zuckerberg San Francisco General Hospital, San Francisco, San Francisco, CA, USA., Whittle A; Division of Pediatrics, Zuckerberg San Francisco General Hospital, San Francisco, San Francisco, CA, USA., Chin G; Institute for Human Genetics, University of California San Francisco, San Francisco, CA, USA., Faubel A; Department of Surgery, University of California, San Francisco, San Francisco, CA, USA., Prasad H; Institute for Human Genetics, University of California San Francisco, San Francisco, CA, USA., Mavura Y; Institute for Human Genetics, University of California San Francisco, San Francisco, CA, USA.; Department of Epidemiology & Biostatistics, University of California San Francisco, San Francisco, CA, USA., Van Ziffle J; Department of Pathology, University of California San Francisco, San Francisco, CA, USA., Devine WP; Department of Pathology, University of California San Francisco, San Francisco, CA, USA., Hodoglugil U; Genomic Medicine Laboratory, University of California San Francisco, San Francisco, CA, USA., Martin PM; Institute for Human Genetics, University of California San Francisco, San Francisco, CA, USA., Sparks TN; Institute for Human Genetics, University of California San Francisco, San Francisco, CA, USA.; Division of Maternal Fetal Medicine, Department of Obstetrics, Gynecology, and Reproductive Sciences, San Francisco, USA., Koenig B; Institute for Human Genetics, University of California San Francisco, San Francisco, CA, USA.; Program in Bioethics, University of California, San Francisco, San Francisco, CA, USA., Ackerman S; Institute for Health & Aging, School of Nursing, University of California San Francisco, San Francisco, CA, USA.; Department of Social & Behavioral Sciences, School of Nursing, University of California San Francisco, San Francisco, CA, USA., Risch N; Institute for Human Genetics, University of California San Francisco, San Francisco, CA, USA.; Department of Epidemiology & Biostatistics, University of California San Francisco, San Francisco, CA, USA., Kwok PY; Cardiovascular Research Institute, University of California San Francisco, San Francisco, CA, USA., Norton ME; Institute for Human Genetics, University of California San Francisco, San Francisco, CA, USA.; Division of Maternal Fetal Medicine, Department of Obstetrics, Gynecology, and Reproductive Sciences, San Francisco, USA.

Publikováno v: NPJ genomic medicine [NPJ Genom Med] 2023 Oct 23; Vol. 8 (1), pp. 34. Date of Electronic Publication: 2023 Oct 23.

Researcher Views on Changes in Personality, Mood, and Behavior in Next-Generation Deep Brain Stimulation.

Autor: Zuk P; Harvard Medical School., Sanchez CE; Baylor College of Medicine., Kostick-Quenet K; Baylor College of Medicine., Muñoz KA; Baylor College of Medicine., Kalwani L; Baylor College of Medicine., Lavingia R; Baylor College of Medicine., Torgerson L; Baylor College of Medicine., Sierra-Mercado D; Baylor College of Medicine.; University of Puerto Rico., Robinson JO; Baylor College of Medicine., Pereira S; Baylor College of Medicine., Outram S; University of California-San Francisco., Koenig BA; University of California-San Francisco., McGuire AL; Baylor College of Medicine., Lázaro-Muñoz G; Harvard Medical School.; Massachusetts General Hospital.

Publikováno v: AJOB neuroscience [AJOB Neurosci] 2023 Jul-Sep; Vol. 14 (3), pp. 287-299. Date of Electronic Publication: 2022 Apr 18.

Participant perceptions of changes in psychosocial domains following participation in an adaptive deep brain stimulation trial.

Autor: Merner AR; Center for Bioethics, Harvard Medical School, 641 Huntington Avenue, Boston, MA, 02115, United States., Kostick-Quenet K; Center for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, Suite 326D, Houston, TX, 77030, United States., Campbell TA; Center for Bioethics, Harvard Medical School, 641 Huntington Avenue, Boston, MA, 02115, United States., Pham MT; Center for Bioethics and Social Justice, Michigan State University, East Fee Hall, 965 Wilson Road Rm A-126, East Lansing, MI, 48824, United States., Sanchez CE; Center for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, Suite 326D, Houston, TX, 77030, United States., Torgerson L; Center for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, Suite 326D, Houston, TX, 77030, United States., Robinson J; Center for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, Suite 326D, Houston, TX, 77030, United States., Pereira S; Center for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, Suite 326D, Houston, TX, 77030, United States., Outram S; Program in Bioethics, University of California, San Francisco, 490 Illinois Street, San Francisco, CA, 94143, United States., Koenig BA; Program in Bioethics, University of California, San Francisco, 490 Illinois Street, San Francisco, CA, 94143, United States., Starr PA; Department of Neurological Surgery, University of California, San Francisco, 400 Parnassus Avenue, San Francisco, CA, 94143, United States., Gunduz A; Norman Fixel Institute for Neurological Diseases, Departments of Neurology and Neurosurgery, University of Florida, 3009 SW Williston Road, Gainesville, FL, 32608, United States; Department of Biomedical Engineering, University of Florida, 1275 Center Drive, Biomedical Science Building, JG283, Gainesville, FL, 32611, United States., Foote KD; Norman Fixel Institute for Neurological Diseases, Departments of Neurology and Neurosurgery, University of Florida, 3009 SW Williston Road, Gainesville, FL, 32608, United States., Okun MS; Norman Fixel Institute for Neurological Diseases, Departments of Neurology and Neurosurgery, University of Florida, 3009 SW Williston Road, Gainesville, FL, 32608, United States., Goodman W; Department of Psychiatry and Behavioral Sciences, Baylor College of Medicine, 1977 Butler Blvd Suite E4.100, Houston, TX, 77030, United States., McGuire AL; Center for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, Suite 326D, Houston, TX, 77030, United States., Zuk P; Center for Bioethics, Harvard Medical School, 641 Huntington Avenue, Boston, MA, 02115, United States., Lázaro-Muñoz G; Center for Bioethics, Harvard Medical School, 641 Huntington Avenue, Boston, MA, 02115, United States; Department of Psychiatry, Massachusetts General Hospital, 55 Fruit Street, Boston, MA, 02114, United States. Electronic address: glazaro@hms.harvard.edu.

Publikováno v: Brain stimulation [Brain Stimul] 2023 Jul-Aug; Vol. 16 (4), pp. 990-998. Date of Electronic Publication: 2023 Jun 15.

Diagnostic yield of pediatric and prenatal exome sequencing in a diverse population.

Autor: Slavotinek A; Department of Pediatrics, University of California, San Francisco, San Francisco, CA, USA. anne.slavotinek@cchmc.org.; Institute for Human Genetics, University of California San Francisco, San Francisco, CA, USA. anne.slavotinek@cchmc.org., Rego S; Department of Pediatrics, University of California, San Francisco, San Francisco, CA, USA.; Institute for Human Genetics, University of California San Francisco, San Francisco, CA, USA., Sahin-Hodoglugil N; Institute for Human Genetics, University of California San Francisco, San Francisco, CA, USA., Kvale M; Institute for Human Genetics, University of California San Francisco, San Francisco, CA, USA.; Department of Epidemiology & Biostatistics, University of California San Francisco, San Francisco, CA, USA., Lianoglou B; Department of Surgery, University of California, San Francisco, San Francisco, CA, USA., Yip T; Department of Pediatrics, University of California, San Francisco, San Francisco, CA, USA.; Institute for Human Genetics, University of California San Francisco, San Francisco, CA, USA., Hoban H; Department of Pediatrics, University of California, San Francisco, San Francisco, CA, USA., Outram S; Institute for Health & Aging, School of Nursing, University of California San Francisco, San Francisco, CA, USA., Anguiano B; Institute for Human Genetics, University of California San Francisco, San Francisco, CA, USA.; Institute for Health & Aging, School of Nursing, University of California San Francisco, San Francisco, CA, USA., Chen F; Institute for Human Genetics, University of California San Francisco, San Francisco, CA, USA., Michelson J; Institute of Human Nutrition, Columbia University Medical Center, New York, NY, USA., Cilio RM; Division of Pediatric Neurology, Department of Pediatrics, University of Louvain, Brussels, Belgium., Curry C; Genetic Medicine, University of California, San Francisco, Fresno, CA, USA., Gallagher RC; Department of Pediatrics, University of California, San Francisco, San Francisco, CA, USA.; Institute for Human Genetics, University of California San Francisco, San Francisco, CA, USA., Gardner M; Department of Neurology, UCSF Benioff Children's Hospital Oakland, Oakland, CA, USA., Kuperman R; Department of Neurology, UCSF Benioff Children's Hospital Oakland, Oakland, CA, USA.; Eysz, Inc, Piedmont, CA, USA., Mendelsohn B; Division of Genetics, Kaiser Permanente Oakland Medical Center, Oakland, CA, USA., Sherr E; Division of Child Neurology, Department of Neurology, University of California, San Francisco, San Francisco, CA, USA., Shieh J; Department of Pediatrics, University of California, San Francisco, San Francisco, CA, USA.; Institute for Human Genetics, University of California San Francisco, San Francisco, CA, USA., Strober J; Division of Child Neurology, Department of Neurology, University of California, San Francisco, San Francisco, CA, USA., Tam A; Department of Pediatrics, University of California, San Francisco, San Francisco, CA, USA., Tenney J; Department of Pediatrics, University of California, San Francisco, San Francisco, CA, USA., Weiss W; Division of Child Neurology, Zuckerberg San Francisco General Hospital, San Francisco, San Francisco, CA, USA., Whittle A; Division of Pediatrics, Zuckerberg San Francisco General Hospital, San Francisco, San Francisco, CA, USA., Chin G; Institute for Human Genetics, University of California San Francisco, San Francisco, CA, USA., Faubel A; Department of Surgery, University of California, San Francisco, San Francisco, CA, USA., Prasad H; Institute for Human Genetics, University of California San Francisco, San Francisco, CA, USA., Mavura Y; Institute for Human Genetics, University of California San Francisco, San Francisco, CA, USA.; Department of Epidemiology & Biostatistics, University of California San Francisco, San Francisco, CA, USA., Van Ziffle J; Department of Pathology, University of California San Francisco, San Francisco, CA, USA., Devine WP; Department of Pathology, University of California San Francisco, San Francisco, CA, USA., Hodoglugil U; Genomic Medicine Laboratory, University of California San Francisco, San Francisco, CA, USA., Martin PM; Institute for Human Genetics, University of California San Francisco, San Francisco, CA, USA., Sparks TN; Institute for Human Genetics, University of California San Francisco, San Francisco, CA, USA.; Division of Maternal Fetal Medicine, Department of Obstetrics, Gynecology, and Reproductive Sciences, San Francisco, USA., Koenig B; Institute for Human Genetics, University of California San Francisco, San Francisco, CA, USA.; Program in Bioethics, University of California, San Francisco, San Francisco, CA, USA., Ackerman S; Institute for Health & Aging, School of Nursing, University of California San Francisco, San Francisco, CA, USA.; Department of Social & Behavioral Sciences, School of Nursing, University of California San Francisco, San Francisco, CA, USA., Risch N; Institute for Human Genetics, University of California San Francisco, San Francisco, CA, USA.; Department of Epidemiology & Biostatistics, University of California San Francisco, San Francisco, CA, USA., Kwok PY; Cardiovascular Research Institute, University of California San Francisco, San Francisco, CA, USA., Norton ME; Institute for Human Genetics, University of California San Francisco, San Francisco, CA, USA.; Division of Maternal Fetal Medicine, Department of Obstetrics, Gynecology, and Reproductive Sciences, San Francisco, USA.

Publikováno v: NPJ genomic medicine [NPJ Genom Med] 2023 May 26; Vol. 8 (1), pp. 10. Date of Electronic Publication: 2023 May 26.