Jennifer Baumbusch, Samara Mayer, Isabel Sloan-Yip. J Genet Couns 2018
Times Cited: 45
Times Cited: 45
Times Cited
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"It is like a jungle gym, and everything is under construction": The parent's perspective of caring for a child with a rare disease.
Genevieve Currie, Joanna Szabo. Child Care Health Dev 2019
Genevieve Currie, Joanna Szabo. Child Care Health Dev 2019
50
The supportive care needs of parents caring for a child with a rare disease: A scoping review.
Lemuel J Pelentsov, Thomas A Laws, Adrian J Esterman. Disabil Health J 2015
Lemuel J Pelentsov, Thomas A Laws, Adrian J Esterman. Disabil Health J 2015
24
Australian families living with rare disease: experiences of diagnosis, health services use and needs for psychosocial support.
Matilda Anderson, Elizabeth J Elliott, Yvonne A Zurynski. Orphanet J Rare Dis 2013
Matilda Anderson, Elizabeth J Elliott, Yvonne A Zurynski. Orphanet J Rare Dis 2013
22
Rare childhood diseases: how should we respond?
Y Zurynski, K Frith, H Leonard, E Elliott. Arch Dis Child 2008
Y Zurynski, K Frith, H Leonard, E Elliott. Arch Dis Child 2008
20
New developmental syndromes: Understanding the family experience.
Cara N Inglese, Alison M Elliott, Anna Lehman. J Genet Couns 2019
Cara N Inglese, Alison M Elliott, Anna Lehman. J Genet Couns 2019
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The supportive care needs of parents with a child with a rare disease: results of an online survey.
Lemuel J Pelentsov, Andrea L Fielder, Thomas A Laws, Adrian J Esterman. BMC Fam Pract 2016
Lemuel J Pelentsov, Andrea L Fielder, Thomas A Laws, Adrian J Esterman. BMC Fam Pract 2016
20
Not the End of the Odyssey: Parental Perceptions of Whole Exome Sequencing (WES) in Pediatric Undiagnosed Disorders.
Allyn McConkie Rosell, Loren D M Pena, Kelly Schoch, Rebecca Spillmann, Jennifer Sullivan, Stephen R Hooper, Yong-Hui Jiang, Nicolas Mathey-Andrews, David B Goldstein, Vandana Shashi. J Genet Couns 2016
Allyn McConkie Rosell, Loren D M Pena, Kelly Schoch, Rebecca Spillmann, Jennifer Sullivan, Stephen R Hooper, Yong-Hui Jiang, Nicolas Mathey-Andrews, David B Goldstein, Vandana Shashi. J Genet Couns 2016
17
Understanding the Psychosocial Effects of WES Test Results on Parents of Children with Rare Diseases.
Lotte Krabbenborg, L E L M Vissers, J Schieving, T Kleefstra, E J Kamsteeg, J A Veltman, M A Willemsen, S Van der Burg. J Genet Couns 2016
Lotte Krabbenborg, L E L M Vissers, J Schieving, T Kleefstra, E J Kamsteeg, J A Veltman, M A Willemsen, S Van der Burg. J Genet Couns 2016
17
A window into living with an undiagnosed disease: illness narratives from the Undiagnosed Diseases Network.
Rebecca C Spillmann, Allyn McConkie-Rosell, Loren Pena, Yong-Hui Jiang, Kelly Schoch, Nicole Walley, Camilla Sanders, Jennifer Sullivan, Stephen R Hooper, Vandana Shashi. Orphanet J Rare Dis 2017
Rebecca C Spillmann, Allyn McConkie-Rosell, Loren Pena, Yong-Hui Jiang, Kelly Schoch, Nicole Walley, Camilla Sanders, Jennifer Sullivan, Stephen R Hooper, Vandana Shashi. Orphanet J Rare Dis 2017
24
'It would be much easier if we were just quiet and disappeared': Parents silenced in the experience of caring for children with rare diseases.
Genevieve Currie, Joanna Szabo. Health Expect 2019
Genevieve Currie, Joanna Szabo. Health Expect 2019
53
Psychosocial Profiles of Parents of Children with Undiagnosed Diseases: Managing Well or Just Managing?
Allyn McConkie-Rosell, Stephen R Hooper, Loren D M Pena, Kelly Schoch, Rebecca C Spillmann, Yong-Hui Jiang, Heidi Cope, Christina Palmer, Vandana Shashi. J Genet Couns 2018
Allyn McConkie-Rosell, Stephen R Hooper, Loren D M Pena, Kelly Schoch, Rebecca C Spillmann, Yong-Hui Jiang, Heidi Cope, Christina Palmer, Vandana Shashi. J Genet Couns 2018
23
How do patients with rare diseases experience the medical encounter? Exploring role behavior and its impact on patient-physician interaction.
Karolina Budych, Thomas M Helms, Carsten Schultz. Health Policy 2012
Karolina Budych, Thomas M Helms, Carsten Schultz. Health Policy 2012
13
Living with a rare disorder: a systematic review of the qualitative literature.
Charlotte von der Lippe, Plata S Diesen, Kristin B Feragen. Mol Genet Genomic Med 2017
Charlotte von der Lippe, Plata S Diesen, Kristin B Feragen. Mol Genet Genomic Med 2017
13
Australian children living with rare diseases: experiences of diagnosis and perceived consequences of diagnostic delays.
Yvonne Zurynski, Marie Deverell, Troy Dalkeith, Sandra Johnson, John Christodoulou, Helen Leonard, Elizabeth J Elliott. Orphanet J Rare Dis 2017
Yvonne Zurynski, Marie Deverell, Troy Dalkeith, Sandra Johnson, John Christodoulou, Helen Leonard, Elizabeth J Elliott. Orphanet J Rare Dis 2017
13
Parental attitudes, values, and beliefs toward the return of results from exome sequencing in children.
J C Sapp, D Dong, C Stark, L E Ivey, G Hooker, L G Biesecker, B B Biesecker. Clin Genet 2014
J C Sapp, D Dong, C Stark, L E Ivey, G Hooker, L G Biesecker, B B Biesecker. Clin Genet 2014
11
The Supportive Care Needs of Parents With a Child With a Rare Disease: A Qualitative Descriptive Study.
Lemuel J Pelentsov, Andrea L Fielder, Adrian J Esterman. J Pediatr Nurs 2016
Lemuel J Pelentsov, Andrea L Fielder, Adrian J Esterman. J Pediatr Nurs 2016
16
Difficulties in the diagnosis and treatment of rare diseases according to the perceptions of patients, relatives and health care professionals.
Marcos Thomazin Lopes, Vera Hermina Koch, Vicente Sarrubbi-Junior, Paulo Rogério Gallo, Magda Carneiro-Sampaio. Clinics (Sao Paulo) 2018
Marcos Thomazin Lopes, Vera Hermina Koch, Vicente Sarrubbi-Junior, Paulo Rogério Gallo, Magda Carneiro-Sampaio. Clinics (Sao Paulo) 2018
29
The importance of genetic counselling in genome-wide sequencing.
Alison M Elliott, Jan M Friedman. Nat Rev Genet 2018
Alison M Elliott, Jan M Friedman. Nat Rev Genet 2018
21
The Caregiving Experiences of Fathers and Mothers of Children With Rare Diseases in Italy: Challenges and Social Support Perceptions.
Paola Cardinali, Laura Migliorini, Nadia Rania. Front Psychol 2019
Paola Cardinali, Laura Migliorini, Nadia Rania. Front Psychol 2019
35
Review of 11 national policies for rare diseases in the context of key patient needs.
Safiyya Dharssi, Durhane Wong-Rieger, Matthew Harold, Sharon Terry. Orphanet J Rare Dis 2017
Safiyya Dharssi, Durhane Wong-Rieger, Matthew Harold, Sharon Terry. Orphanet J Rare Dis 2017
11
The clinical application of genome-wide sequencing for monogenic diseases in Canada: Position Statement of the Canadian College of Medical Geneticists.
Kym Boycott, Taila Hartley, Shelin Adam, Francois Bernier, Karen Chong, Bridget A Fernandez, Jan M Friedman, Michael T Geraghty, Stacey Hume, Bartha M Knoppers,[...]. J Med Genet 2015
Kym Boycott, Taila Hartley, Shelin Adam, Francois Bernier, Karen Chong, Bridget A Fernandez, Jan M Friedman, Michael T Geraghty, Stacey Hume, Bartha M Knoppers,[...]. J Med Genet 2015
8
Factors associated with perceived uncertainty among parents of children with undiagnosed medical conditions.
Anne C Madeo, Kathleen E O'Brien, Barbara A Bernhardt, Barbara B Biesecker. Am J Med Genet A 2012
Anne C Madeo, Kathleen E O'Brien, Barbara A Bernhardt, Barbara B Biesecker. Am J Med Genet A 2012
9
Recommendations for the integration of genomics into clinical practice.
Sarah Bowdin, Adel Gilbert, Emma Bedoukian, Christopher Carew, Margaret P Adam, John Belmont, Barbara Bernhardt, Leslie Biesecker, Hans T Bjornsson, Miriam Blitzer,[...]. Genet Med 2016
Sarah Bowdin, Adel Gilbert, Emma Bedoukian, Christopher Carew, Margaret P Adam, John Belmont, Barbara Bernhardt, Leslie Biesecker, Hans T Bjornsson, Miriam Blitzer,[...]. Genet Med 2016
8
Factors Associated with Parental Adaptation to Children with an Undiagnosed Medical Condition.
Tatiane Yanes, Linda Humphreys, Aideen McInerney-Leo, Barbara Biesecker. J Genet Couns 2017
Tatiane Yanes, Linda Humphreys, Aideen McInerney-Leo, Barbara Biesecker. J Genet Couns 2017
23
"Living an Obstacle Course": A Qualitative Study Examining the Experiences of Caregivers of Children with Rett Syndrome.
Domingo Palacios-Ceña, Pilar Famoso-Pérez, Jaime Salom-Moreno, Pilar Carrasco-Garrido, Jorge Pérez-Corrales, Paula Paras-Bravo, Javier Güeita-Rodriguez. Int J Environ Res Public Health 2018
Domingo Palacios-Ceña, Pilar Famoso-Pérez, Jaime Salom-Moreno, Pilar Carrasco-Garrido, Jorge Pérez-Corrales, Paula Paras-Bravo, Javier Güeita-Rodriguez. Int J Environ Res Public Health 2018
44
Diagnostic exome sequencing in children: A survey of parental understanding, experience and psychological impact.
J Wynn, R Ottman, J Duong, A L Wilson, P Ahimaz, J Martinez, R Rabin, E Rosen, R Webster, C Au,[...]. Clin Genet 2018
J Wynn, R Ottman, J Duong, A L Wilson, P Ahimaz, J Martinez, R Rabin, E Rosen, R Webster, C Au,[...]. Clin Genet 2018
14
Genetic counseling considerations with rapid genome-wide sequencing in a neonatal intensive care unit.
Emma E Smith, Christèle du Souich, Nick Dragojlovic, Alison M Elliott. J Genet Couns 2019
Emma E Smith, Christèle du Souich, Nick Dragojlovic, Alison M Elliott. J Genet Couns 2019
26
Stress and well-being among parents of children with rare diseases: a prospective intervention study.
Lotta Dellve, Lena Samuelsson, Andreas Tallborn, Anders Fasth, Lillemor R-M Hallberg. J Adv Nurs 2006
Lotta Dellve, Lena Samuelsson, Andreas Tallborn, Anders Fasth, Lillemor R-M Hallberg. J Adv Nurs 2006
8
What, if anything, is specific about having a rare disorder? Patients' judgements on being ill and being rare.
Caroline Huyard. Health Expect 2009
Caroline Huyard. Health Expect 2009
10
Why rare diseases are an important medical and social issue.
Arrigo Schieppati, Jan-Inge Henter, Erica Daina, Anita Aperia. Lancet 2008
Arrigo Schieppati, Jan-Inge Henter, Erica Daina, Anita Aperia. Lancet 2008
6
Using online health communication to manage chronic sorrow: mothers of children with rare diseases speak.
Adriana D Glenn. J Pediatr Nurs 2015
Adriana D Glenn. J Pediatr Nurs 2015
9
Experts' Perspectives Toward a Population Health Approach for Children With Medical Complexity.
Elizabeth S Barnert, Ryan J Coller, Bergen B Nelson, Lindsey R Thompson, Vincent Chan, Cesar Padilla, Thomas S Klitzner, Moira Szilagyi, Paul J Chung. Acad Pediatr 2017
Elizabeth S Barnert, Ryan J Coller, Bergen B Nelson, Lindsey R Thompson, Vincent Chan, Cesar Padilla, Thomas S Klitzner, Moira Szilagyi, Paul J Chung. Acad Pediatr 2017
17
Parenting stress among parents of children with Neurodevelopmental Disorders.
Francesco Craig, Francesca Felicia Operto, Andrea De Giacomo, Lucia Margari, Alessandro Frolli, Massimiliano Conson, Sara Ivagnes, Marianna Monaco, Francesco Margari. Psychiatry Res 2016
Francesco Craig, Francesca Felicia Operto, Andrea De Giacomo, Lucia Margari, Alessandro Frolli, Massimiliano Conson, Sara Ivagnes, Marianna Monaco, Francesco Margari. Psychiatry Res 2016
6
Models of Care Delivery for Children With Medical Complexity.
Elisabeth Pordes, John Gordon, Lee M Sanders, Eyal Cohen. Pediatrics 2018
Elisabeth Pordes, John Gordon, Lee M Sanders, Eyal Cohen. Pediatrics 2018
6
The Genomic Consultation Service: A clinical service designed to improve patient selection for genome-wide sequencing in British Columbia.
Alison M Elliott, Christèle du Souich, Shelin Adam, Nick Dragojlovic, Clara van Karnebeek, Tanya N Nelson, Anna Lehman, Larry D Lynd, Jan M Friedman. Mol Genet Genomic Med 2018
Alison M Elliott, Christèle du Souich, Shelin Adam, Nick Dragojlovic, Clara van Karnebeek, Tanya N Nelson, Anna Lehman, Larry D Lynd, Jan M Friedman. Mol Genet Genomic Med 2018
18
ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencing.
Robert C Green, Jonathan S Berg, Wayne W Grody, Sarah S Kalia, Bruce R Korf, Christa L Martin, Amy L McGuire, Robert L Nussbaum, Julianne M O'Daniel, Kelly E Ormond,[...]. Genet Med 2013
Robert C Green, Jonathan S Berg, Wayne W Grody, Sarah S Kalia, Bruce R Korf, Christa L Martin, Amy L McGuire, Robert L Nussbaum, Julianne M O'Daniel, Kelly E Ormond,[...]. Genet Med 2013
6
A new definition of Genetic Counseling: National Society of Genetic Counselors' Task Force report.
Robert Resta, Barbara Bowles Biesecker, Robin L Bennett, Sandra Blum, Susan Estabrooks Hahn, Michelle N Strecker, Janet L Williams. J Genet Couns 2006
Robert Resta, Barbara Bowles Biesecker, Robin L Bennett, Sandra Blum, Susan Estabrooks Hahn, Michelle N Strecker, Janet L Williams. J Genet Couns 2006
6
Parental interest in genomic sequencing of newborns: enrollment experience from the BabySeq Project.
Casie A Genetti, Talia S Schwartz, Jill O Robinson, Grace E VanNoy, Devan Petersen, Stacey Pereira, Shawn Fayer, Hayley A Peoples, Pankaj B Agrawal, Wendi N Betting,[...]. Genet Med 2019
Casie A Genetti, Talia S Schwartz, Jill O Robinson, Grace E VanNoy, Devan Petersen, Stacey Pereira, Shawn Fayer, Hayley A Peoples, Pankaj B Agrawal, Wendi N Betting,[...]. Genet Med 2019
9
Paediatric genomics: diagnosing rare disease in children.
Caroline F Wright, David R FitzPatrick, Helen V Firth. Nat Rev Genet 2018
Caroline F Wright, David R FitzPatrick, Helen V Firth. Nat Rev Genet 2018
6
Parents' Perspectives on Supporting Their Decision Making in Genome-Wide Sequencing.
Karen C Li, Patricia H Birch, Bernard M Garrett, Maura MacPhee, Shelin Adam, Jan M Friedman. J Nurs Scholarsh 2016
Karen C Li, Patricia H Birch, Bernard M Garrett, Maura MacPhee, Shelin Adam, Jan M Friedman. J Nurs Scholarsh 2016
21
Primary care supports for children with chronic health conditions: identifying and predicting unmet family needs.
Janet E Farmer, Wendi E Marien, Mary J Clark, Ashley Sherman, Thomas J Selva. J Pediatr Psychol 2004
Janet E Farmer, Wendi E Marien, Mary J Clark, Ashley Sherman, Thomas J Selva. J Pediatr Psychol 2004
6
A systematic review of approaches for engaging patients for research on rare diseases.
Laura P Forsythe, Victoria Szydlowski, Mohammad Hassan Murad, Stanley Ip, Zhen Wang, Tarig A Elraiyah, Rachael Fleurence, David H Hickam. J Gen Intern Med 2014
Laura P Forsythe, Victoria Szydlowski, Mohammad Hassan Murad, Stanley Ip, Zhen Wang, Tarig A Elraiyah, Rachael Fleurence, David H Hickam. J Gen Intern Med 2014
6
The experience of parents of children with rare diseases when communicating with healthcare professionals: towards an integrative theory of trust.
Beni Gómez-Zúñiga, Rafael Pulido Moyano, Modesta Pousada Fernández, Alicia García Oliva, Manuel Armayones Ruiz. Orphanet J Rare Dis 2019
Beni Gómez-Zúñiga, Rafael Pulido Moyano, Modesta Pousada Fernández, Alicia García Oliva, Manuel Armayones Ruiz. Orphanet J Rare Dis 2019
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Cases from the Undiagnosed Diseases Network: The continued value of counseling skills in a new genomic era.
Ellen F Macnamara, Kelly Schoch, Emily G Kelley, Elizabeth Fieg, Elly Brokamp, Rebecca Signer, Kimberly LeBlanc, Allyn McConkie-Rosell, Christina G S Palmer. J Genet Couns 2019
Ellen F Macnamara, Kelly Schoch, Emily G Kelley, Elizabeth Fieg, Elly Brokamp, Rebecca Signer, Kimberly LeBlanc, Allyn McConkie-Rosell, Christina G S Palmer. J Genet Couns 2019
20
"Before Facebook and before social media…we did not know anybody else that had this": parent perspectives on internet and social media use during the pediatric clinical genetic testing process.
Krysta S Barton, Andrew Wingerson, Julie R Barzilay, Holly K Tabor. J Community Genet 2019
Krysta S Barton, Andrew Wingerson, Julie R Barzilay, Holly K Tabor. J Community Genet 2019
25
Communication Needs for Individuals With Rare Diseases Within and Around the Healthcare System of Northern Ireland.
Ashleen L Crowe, Amy Jayne McKnight, Helen McAneney. Front Public Health 2019
Ashleen L Crowe, Amy Jayne McKnight, Helen McAneney. Front Public Health 2019
18
Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database.
Stéphanie Nguengang Wakap, Deborah M Lambert, Annie Olry, Charlotte Rodwell, Charlotte Gueydan, Valérie Lanneau, Daniel Murphy, Yann Le Cam, Ana Rath. Eur J Hum Genet 2020
Stéphanie Nguengang Wakap, Deborah M Lambert, Annie Olry, Charlotte Rodwell, Charlotte Gueydan, Valérie Lanneau, Daniel Murphy, Yann Le Cam, Ana Rath. Eur J Hum Genet 2020
6
Parents' perceptions of personal utility of exome sequencing results.
Lonna Mollison, Julianne M O'Daniel, Gail E Henderson, Jonathan S Berg, Debra Skinner. Genet Med 2020
Lonna Mollison, Julianne M O'Daniel, Gail E Henderson, Jonathan S Berg, Debra Skinner. Genet Med 2020
15
Exploring the genetic counselor's role in facilitating meaning-making: rare disease diagnoses.
Benjamin M Helm. J Genet Couns 2015
Benjamin M Helm. J Genet Couns 2015
15
Genetic Counseling-Stress, Coping, and the Empowerment Perspective.
A McConkie-Rosell, J A Sullivan. J Genet Couns 1999
A McConkie-Rosell, J A Sullivan. J Genet Couns 1999
9
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