| scholarly article | Q13442814 |
| P50 | author | Joris A Veltman | Q57687954 |
| P2093 | author name string | E J Kamsteeg | |
| M A Willemsen | |||
| T Kleefstra | |||
| Lotte Krabbenborg | |||
| J Schieving | |||
| L E L M Vissers | |||
| S Van der Burg | |||
| P2860 | cites work | New "first families": the psychosocial impact of new genetic technologies. | Q50591212 |
| The usefulness of whole-exome sequencing in routine clinical practice. | Q50657606 | ||
| Parents' perspectives on coping with Duchenne muscular dystrophy. | Q50965998 | ||
| Disease and illness. Distinctions between professional and popular ideas of sickness. | Q51286528 | ||
| A de novo paradigm for mental retardation. | Q51828800 | ||
| Living without labels: the interactional management of diagnostic uncertainty in the genetic counselling clinic. | Q53586646 | ||
| Diagnostic exome sequencing in persons with severe intellectual disability | Q55670486 | ||
| Informed consent for whole genome sequencing: a qualitative analysis of participant expectations and perceptions of risks, benefits, and harms. | Q55711624 | ||
| Next generation genetic counseling: introduction to the special issue | Q33894048 | ||
| Informed consent for exome sequencing in diagnostics: exploring first experiences and views of professionals and patients | Q34507484 | ||
| On the triad disease, illness and sickness | Q35073792 | ||
| Lynch syndrome patients' views of and preferences for return of results following whole exome sequencing | Q35671138 | ||
| "What does it mean?": uncertainties in understanding results of chromosomal microarray testing | Q36241921 | ||
| A place for genetic uncertainty: parents valuing an unknown in the meaning of disease | Q36496230 | ||
| Stakeholders' opinions on the implementation of pediatric whole exome sequencing: implications for informed consent | Q37360685 | ||
| Parental attitudes, values, and beliefs toward the return of results from exome sequencing in children | Q37595586 | ||
| Informed consent for return of incidental findings in genomic research | Q37722733 | ||
| Content analysis and thematic analysis: Implications for conducting a qualitative descriptive study | Q38088331 | ||
| "Is it going to hurt?": the impact of the diagnostic odyssey on children and their families | Q39119803 | ||
| Genetic counseling, activism and 'genotype-first' diagnosis of developmental disorders | Q39244531 | ||
| 22q11 deletion syndrome - the meaning of a diagnosis. A qualitative study on parental perspectives | Q39284758 | ||
| Why do we need a diagnosis? A qualitative study of parents' experiences, coping and needs, when the newborn child is severely disabled | Q40222614 | ||
| Evaluating a counselling strategy for diagnostic WES in paediatric neurology: an exploration of parents' information and communication needs | Q41009411 | ||
| A genetic diagnosis of maturity-onset diabetes of the young (MODY): experiences of patients and family members | Q41238830 | ||
| The Client's Perspective of Genetic Counseling-A Grounded Theory Study | Q48668214 | ||
| P275 | copyright license | Creative Commons Attribution 4.0 International | Q20007257 |
| P6216 | copyright status | copyrighted | Q50423863 |
| P433 | issue | 6 | |
| P921 | main subject | rare disease | Q929833 |
| P304 | page(s) | 1207-1214 | |
| P577 | publication date | 2016-04-20 | |
| P1433 | published in | Journal of Genetic Counseling | Q6295247 |
| P1476 | title | Understanding the Psychosocial Effects of WES Test Results on Parents of Children with Rare Diseases | |
| P478 | volume | 25 |
| Q54937520 | A Model Program for Translational Medicine in Epilepsy Genetics. |
| Q38883296 | A clinical utility study of exome sequencing versus conventional genetic testing in pediatric neurology |
| Q55074639 | Clinical providers' experiences with returning results from genomic sequencing: an interview study. |
| Q57027904 | Diagnostic and Therapeutic Misconception: Parental Expectations and Perspectives Regarding Genetic Testing for Developmental Disorders |
| Q47278375 | Diagnostic exome sequencing in children: A survey of parental understanding, experience and psychological impact |
| Q63446437 | Exome sequencing disclosures in pediatric cancer care: Patterns of communication among oncologists, genetic counselors, and parents |
| Q64040878 | Exome sequencing in clinical settings: preferences and experiences of parents of children with rare diseases (SEQUAPRE study) |
| Q49720670 | Genetic Counseling in the Era of Genomics: What's all the Fuss about? |
| Q47601953 | Impact of Receiving Secondary Results from Genomic Research: A 12-Month Longitudinal Study |
| Q58860482 | Parental Perspectives on Whole-Exome Sequencing in Pediatric Cancer: A Typology of Perceived Utility |
| Q97905170 | Parental experiences of ultrarapid genomic testing for their critically unwell infants and children |
| Q92995888 | Parents of newborns in the NICU enrolled in genome sequencing research: hopeful, but not naïve |
| Q89455418 | Parents' motivations, concerns and understanding of genome sequencing: a qualitative interview study |
| Q92133078 | Parents' perceptions of personal utility of exome sequencing results |
| Q92691181 | Psychological outcomes related to exome and genome sequencing result disclosure: a meta-analysis of seven Clinical Sequencing Exploratory Research (CSER) Consortium studies |
| Q92667767 | Responsibility, culpability, and parental views on genomic testing for seriously ill children |
| Q91639258 | Whole Exome Sequencing Identified a Novel Biallelic SMARCAL1 Mutation in the Extremely Rare Disease SIOD |
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