Family genetic result communication in rare and undiagnosed disease communities: Understanding the practice

Author:

Studwell Courtney M.12,Kelley Emily G.3,Sinsheimer Janet S.45,Palmer Christina G. S.678,LeBlanc Kimberly3,Acosta Maria T,Adam Margaret,Adams David R.,Agrawal Pankaj B.,Alejandro Mercedes E.,Alvey Justin,Amendola Laura,Andrews Ashley,Ashley Euan A.,Azamian Mahshid S.,Bacino Carlos A.,Bademci Guney,Baker Eva,Balasubramanyam Ashok,Baldridge Dustin,Bale Jim,Bamshad Michael,Barbouth Deborah,Bayrak‐Toydemir Pinar,Beck Anita,Beggs Alan H.,Behrens Edward,Bejerano Gill,Bennet Jimmy,Berg‐Rood Beverly,Bernstein Jonathan A.,Berry Gerard T.,Bican Anna,Bivona Stephanie,Blue Elizabeth,Bohnsack John,Bonnenmann Carsten,Bonner Devon,Botto Lorenzo,Boyd Brenna,Briere Lauren C.,Brokamp Elly,Brown Gabrielle,Burke Elizabeth A.,Burrage Lindsay C.,Butte Manish J.,Byers Peter,Byrd William E.,Carey John,Carrasquillo Olveen,Chang Ta Chen Peter,Chanprasert Sirisak,Chao Hsiao‐Tuan,Clark Gary D.,Coakley Terra R.,Cobban Laurel A.,Cogan Joy D.,Coggins Matthew,Cole F. Sessions,Colley Heather A.,Cooper Cynthia M.,Cope Heidi,Craigen William J.,Crouse Andrew B.,Cunningham Michael,D'Souza Precilla,Dai Hongzheng,Dasari Surendra,Davids Mariska,Dayal Jyoti G.,Deardorff Matthew,Dell'Angelica Esteban C.,Dhar Shweta U.,Dipple Katrina,Doherty Daniel,Dorrani Naghmeh,Douine Emilie D.,Draper David D.,Duncan Laura,Earl Dawn,Eckstein David J.,Emrick Lisa T.,Eng Christine M.,Esteves Cecilia,Estwick Tyra,Falk Marni,Fernandez Liliana,Ferreira Carlos,Fieg Elizabeth L.,Findley Laurie C.,Fisher Paul G.,Fogel Brent L.,Forghani Irman,Fresard Laure,Gahl William A.,Glass Ian,Godfrey Rena A.,Golden‐Grant Katie,Goldman Alica M.,Goldstein David B.,Grajewski Alana,Groden Catherine A.,Gropman Andrea L.,Gutierrez Irma,Hahn Sihoun,Hamid Rizwan,Hanchard Neil A.,Hassey Kelly,Hayes Nichole,High Frances,Hing Anne,Hisama Fuki M.,Holm Ingrid A.,Hom Jason,Horike‐Pyne Martha,Huang Alden,Huang Yong,Isasi Rosario,Jamal Fariha,Jarvik Gail P.,Jarvik Jeffrey,Jayadev Suman,Johnston Jean M.,Karaviti Lefkothea,Kelley Emily G.,Kennedy Jennifer,Kiley Dana,Kohane Isaac S.,Kohler Jennefer N.,Krakow Deborah,Krasnewich Donna M.,Kravets Elijah,Korrick Susan,Koziura Mary,Krier Joel B.,Lalani Seema R.,Lam Byron,Lam Christina,Lanpher Brendan C.,Lanza Ian R.,Lau C. Christopher,LeBlanc Kimberly,Lee Brendan H.,Lee Hane,Levitt Roy,Lewis Richard A.,Lincoln Sharyn A.,Liu Pengfei,Liu Xue Zhong,Longo Nicola,Loo Sandra K.,Loscalzo Joseph,Maas Richard L.,Macnamara Ellen F.,MacRae Calum A.,Maduro Valerie V.,Majcherska Marta M.,Malicdan May Christine V.,Mamounas Laura A.,Manolio Teri A.,Mao Rong,Maravilla Kenneth,Markello Thomas C.,Marom Ronit,Marth Gabor,Martin Beth A.,Martin Martin G.,Martínez‐Agosto Julian A.,Marwaha Shruti,McCauley Jacob,McConkie‐Rosell Allyn,McCormack Colleen E.,McCray Alexa T.,McGee Elisabeth,Mefford Heather,Merritt J. Lawrence,Might Matthew,Mirzaa Ghayda,Morava Eva,Moretti Paolo M.,Morimoto Marie,Mulvihill John J.,Murdock David R.,Nakano‐Okuno Mariko,Nath Avi,Nelson Stan F.,Newman John H.,Nicholas Sarah K.,Nickerson Deborah,Novacic Donna,Oglesbee Devin,Orengo James P.,Pace Laura,Pak Stephen,Pallais J. Carl,Palmer Christina G.S.,Papp Jeanette C.,Parker Neil H.,Phillips John A.,Posey Jennifer E.,Potocki Lorraine,Pusey Barbara N.,Quinlan Aaron,Raskind Wendy,Raja Archana N.,Rao Deepak A.,Renteria Genecee,Reuter Chloe M.,Rives Lynette,Robertson Amy K.,Rodan Lance H.,Rosenfeld Jill A.,Rosenwasser Natalie,Ruzhnikov Maura,Sacco Ralph,Sampson Jacinda B.,Samson Susan L.,Saporta Mario,Scott C. Ron,Schaechter Judy,Schedl Timothy,Schoch Kelly,Scott Daryl A.,Sharma Prashant,Shashi Vandana,Shin Jimann,Signer Rebecca,Sillari Catherine H.,Silverman Edwin K.,Sinsheimer Janet S.,Sisco Kathy,Smith Edward C.,Smith Kevin S.,Solem Emily,Solnica‐Krezel Lilianna,Spillmann Rebecca C.,Stoler Joan M.,Stong Nicholas,Sullivan Jennifer A.,Sullivan Kathleen,Sun Angela,Sutton Shirley,Sweetser David A.,Sybert Virginia,Tabor Holly K.,Tamburro Cecelia P.,Tan Queenie K.‐G.,Tekin Mustafa,Telischi Fred,Thorson Willa,Tifft Cynthia J.,Toro Camilo,Tran Alyssa A.,Tucker Brianna M.,Urv Tiina K.,Vanderver Adeline,Velinder Matt,Viskochil Dave,Vogel Tiphanie P.,Wahl Colleen E.,Wallace Stephanie,Walley Nicole M.,Walsh Chris A.,Wener Mark,Wenger Tara,Perry Katherine Wesseling,Westerfield Monte,Wheeler Matthew T.,Whitlock Jordan,Wolfe Lynne A.,Woods Jeremy D.,Yamamoto Shinya,Yang John,Yu Guoyun,Zastrow Diane B.,Zhao Chunli,Zuchner Stephan,

Affiliation:

1. Department of Graduate Medical Sciences Boston University School of Medicine Boston MA USA

2. Department of Pathology Brigham and Women's Hospital Boston MA USA

3. Department of Biomedical Informatics Harvard Medical School Boston MA USA

4. Departments of Human Genetics and Computational Medicine David Geffen School of Medicine at UCLA Los Angeles CA USA

5. Department of Biostatistics UCLA Fielding School of Public Health Los Angeles CA USA

6. Department of Psychiatry and Biobehavioral Sciences UCLA Los Angeles CA USA

7. Department of Human Genetics UCLA Los Angeles CA USA

8. Institute for Society and Genetics UCLA Los Angeles CA USA

Publisher

Wiley

Subject

Genetics(clinical)

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