All Stories

  1. Hope, but never expect? Comparing parents' pre‐ and post‐disclosure attitudes toward return of results from diagnostic exome sequencing for their child
  2. Parents, their children, whole exome sequencing and unsolicited findings: growing towards the child’s future autonomy
  3. Risk Assessment for Huntington’s Disease for (Future) Offspring Requires Offering Preconceptional CAG Analysis to Both Partners
  4. Pregnant couples at increased risk for common aneuploidies choose maximal information from invasive genetic testing
  5. Thinking about the end of life: a common issue for patients with Huntington’s disease
  6. Diagnostic genetic testing for Huntington's disease
  7. Decision-making on preimplantation genetic diagnosis and prenatal diagnosis: a challenge for couples with hereditary breast and ovarian cancer
  8. Expectations and experiences of investigators and parents involved in a clinical trial for Duchenne/Becker muscular dystrophy
  9. Offspring of a parent with genetic disease: Childhood experiences and adult psychological characteristics.
  10. Cancer risk communication, predictive testing and management in France, Germany, the Netherlands and the UK: general practitioners' and breast surgeons' current practice and preferred practice responsibilities
  11. International variation in physicians’ attitudes towards prophylactic mastectomy – Comparison between France, Germany, the Netherlands and the United Kingdom
  12. Impact of delayed implant and DIEP flap breast reconstruction on body image and sexual satisfaction: a prospective follow-up study
  13. Value-based healthcare in Lynch syndrome
  14. Informing family members of individuals with Lynch syndrome: a guideline for clinical geneticists
  15. Prenatal testing for Huntington's disease in the Netherlands from 1998 to 2008
  16. Recommendations for the predictive genetic test in Huntington's disease
  17. The personal experience of parenting a child with Juvenile Huntington’s Disease: perceptions across Europe
  18. Reproductive options for prospective parents in families with Huntington's disease: clinical, psychological and ethical reflections
  19. Euthanasia and Advance Directives in Huntington's Disease: Qualitative Analysis of Interviews with Patients
  20. A plea for end-of-life discussions with patients suffering from Huntington's disease: the role of the physician
  21. Evaluation of exclusion prenatal and exclusion preimplantation genetic diagnosis for Huntington's disease in the Netherlands
  22. Body image issues after bilateral prophylactic mastectomy with breast reconstruction in healthy women at risk for hereditary breast cancer
  23. Perceptions of genetic research and testing among members of families with an increased risk of malignant melanoma
  24. Euthanasia and physician-assisted suicide in Huntington's disease in The Netherlands
  25. Skin Examination Behavior
  26. Surveillance for hereditary cancer: Does the benefit outweigh the psychological burden?—A systematic review
  27. Quality in genetic counselling for presymptomatic testing — clinical guidelines for practice across the range of genetic conditions
  28. Genetic counseling does not fulfill the counselees' need for certainty in hereditary breast/ovarian cancer families: an explorative assessment
  29. The counselees' self-reported request for psychological help in genetic counseling for hereditary breast/ovarian cancer: not only psychopathology matters
  30. Developing a policy for paediatric biobanks: principles for good practice
  31. Body image and psychological distress after prophylactic mastectomy and breast reconstruction in genetically predisposed women: A prospective long-term follow-up study
  32. Psychosocial aspects of preconception consultation in primary care: lessons from our experience in clinical genetics
  33. Long-term psychological distress in women at risk for hereditary breast cancer adhering to regular surveillance: a risk profile
  34. Exploring the short-term impact of DNA-testing in breast cancer patients: The counselees’ perception matters, but the actual BRCA1/2 result does not
  35. The short-term psychological impact of complications after breast reconstruction
  36. Adverse childhood experiences of persons at risk for Huntington's disease or BRCA1/2 hereditary breast/ovarian cancer
  37. Information-seeking behaviour and coping style of women opting for either implant or DIEP-flap breast reconstruction
  38. A counselee-oriented perspective on risk communication in genetic counseling: Explaining the inaccuracy of the counseleesʼ risk perception shortly after BRCA1/2 test result disclosure
  39. Women’s motives to opt for either implant or DIEP-flap breast reconstruction
  40. Familial breast cancer: is it time to move from a reactive to a proactive role?
  41. Genetic testing for familial/hereditary breast cancer—comparison of guidelines and recommendations from the UK, France, the Netherlands and Germany
  42. Family communication matters: The impact of telling relatives about unclassified variants and uninformative DNA-test results
  43. The impact of social and personal resources on psychological distress in women at risk for hereditary breast cancer
  44. Perceiving cancer-risks and heredity-likelihood in genetic-counseling: how counselees recall and interpret BRCA 1/2-test results
  45. Opening the psychological black box in genetic counseling. The psychological impact of DNA testing is predicted by the counselees' perception, the medical impact by the pathogenic or uninformative BRCA1/2-result
  46. Duchenne/Becker muscular dystrophy in the family: have potential carriers been tested at a molecular level?
  47. Psychological distress in women at risk for hereditary breast cancer: the role of family communication and perceived social support
  48. A whisper-game perspective on the family communication of DNA-test results: a retrospective study on the communication process of BRCA1/2-test results between proband and relatives
  49. The contribution of self-esteem and self-concept in psychological distress in women at risk of hereditary breast cancer
  50. Predictors of Sun Protection Behaviors and Severe Sunburn in an International Online Study
  51. Melanoma risk factors, perceived threat and intentional tanning: an international online survey
  52. Italian appeal court: a genetic predisposition to commit murder?
  53. Myotonic dystrophy - the burden for patients and their partners
  54. High satisfaction rates in women after DIEP flap breast reconstruction
  55. Turkish Female Immigrants’ Intentions to Participate in Preconception Carrier Screening for Hemoglobinopathies in the Netherlands: An Empirical Study
  56. Coordinated multidisciplinary care for Huntington's disease. An outpatient department
  57. Disentangling the Babylonian speech confusion in genetic counseling: An analysis of the reliability and validity of the nomenclature for BRCA1/2 DNA-test results other than pathogenic
  58. Genetic discrimination in Huntington's disease
  59. On the biomedicalization of alcoholism
  60. A Decade of Genetic Counseling in Frontotemporal Dementia Affected Families: Few Counseling Requests and much Familial Opposition to Testing
  61. Sense of Competence in a Dutch Sample of Informal Caregivers of Frontotemporal Dementia Patients
  62. Predictive genetic testing for cardiovascular diseases: Impact on carrier children
  63. Putting it all behind: long-term psychological impact of an inconclusive DNA test result for breast cancer
  64. The counsellees' view of an unclassified variant in BRCA1/2: recall, interpretation, and impact on life
  65. Genetic testing in familial melanoma: uptake and implications
  66. Estimating decreased risks for Huntington disease without a test
  67. Health-related quality of life of children with a positive carrier status for inherited cardiovascular diseases
  68. Frontotemporal Dementia: Change of Familial Caregiver Burden and Partner Relation in a Dutch Cohort of 63 Patients
  69. Predictive testing for Huntington's disease
  70. Who is prone to high levels of distress after prophylactic mastectomy and/or salpingo-ovariectomy?
  71. The common sense model of self-regulation and psychological adjustment to predictive genetic testing: a prospective study
  72. Passive coping and psychological distress in women adhering to regular breast cancer surveillance
  73. A prospective study of the impact of genetic susceptibility testing for BRCA1/2 or HNPCC on family relationships
  74. The course of distress in women at increased risk of breast and ovarian cancer due to an (identified) genetic susceptibility who opt for prophylactic mastectomy and/or salpingo-oophorectomy
  75. Prognostic factors for hereditary cancer distress six months after BRCA1/2 or HNPCC genetic susceptibility testing
  76. Comparison of individuals opting for BRCA1/2 or HNPCC genetic susceptibility testing with regard to coping, illness perceptions, illness experiences, family system characteristics and hereditary cancer distress
  77. Family system characteristics and psychological adjustment to cancer susceptibility genetic testing: a prospective study
  78. Attachment in families with Huntington's disease
  79. Experience of parental cancer in childhood is a risk factor for psychological distress during genetic cancer susceptibility testing
  80. Clinical Characteristics Affect the Impact of an Uninformative DNA Test Result: The Course of Worry and Distress Experienced by Women Who Apply for Genetic Testing for Breast Cancer
  81. Satisfaction with Prophylactic Mastectomy and Breast Reconstruction in Genetically Predisposed Women
  82. Calculating risk changes after negative mutation test outcomes for autosomal dominant hereditary late-onset disorders
  83. Impact of Behavioural Problems on Spousal Caregivers: A Comparison between Alzheimer’s Disease and Frontotemporal Dementia
  84. Caregiver Burden, Health-Related Quality of Life and Coping in Dementia Caregivers: A Comparison of Frontotemporal Dementia and Alzheimer’s Disease
  85. Exploring the course of psychological distress around two successive control visits in women at hereditary risk of breast cancer
  86. What’s the message? Interpretation of an uninformative BRCA1/2 test result for women at risk of familial breast cancer
  87. Hereditary melanoma and predictive genetic testing: why not?
  88. The impact of having relatives affected with breast cancer on psychological distress in women at increased risk for hereditary breast cancer
  89. Feeling at risk: How women interpret their familial breast cancer risk
  90. Psychological distress in women at increased risk for breast cancer: the role of risk perception
  91. Variants of Uncertain Clinical Significance as a Result of BRCA1/2 Testing: Impact of an Ambiguous Breast Cancer Risk Message
  92. Methodology in longitudinal studies on psychological effects of predictive DNA testing: a review
  93. Impact of screening for breast cancer in high-risk women on health-related quality of life
  94. Adverse Effects of Predictive Testing for Huntington Disease Underestimated: Long-Term Effects 7-10 Years After the Test.
  95. Frontotemporal Dementia: Behavioral Symptoms and Caregiver Distress
  96. A Counselling Model for BRCA1/2 Genetic Susceptibility Testing
  97. Long-Term Psychological Impact of Carrying a BRCA1/2 Mutation and Prophylactic Surgery: A 5-Year Follow-Up Study
  98. Nonlinear Effects in Behavioral Changes in Huntington Disease
  99. Testing the test?why pursue a better test for Huntington disease?
  100. Psychological Distress and Breast Self-Examination Frequency in Women at Increased Risk for Hereditary or Familial Breast Cancer
  101. Cancer Genetics Service Provision: A Comparison of Seven European Centres
  102. A Hereditary Disorder In the Family and the Family Life Cycle: Huntington Disease as a Paradigm
  103. Genetic testing in hereditary non-polyposis colorectal cancer families with a MSH2, MLH1, or MSH6 mutation
  104. Behavioural complaints in participants who underwent predictive testing for Huntington's disease
  105. Favourable mutation test outcomes for individuals at risk for Huntington disease change the perspectives of first-degree relatives
  106. Psychological studies in Huntington's disease: making up the balance
  107. Men at risk of being a mutation carrier for hereditary breast/ovarian cancer: an exploration of attitudes and psychological functioning during genetic testing
  108. New problems in testing for Huntington's disease: the issue of intermediate and reduced penetrance alleles
  109. Psychological impact of receiving a BRCA1BRCA2 test result
  110. Presentation of amyloidosis in carriers of the codon 692 mutation in the amyloid precursor protein gene (APP692)
  111. Prenatal consultation after a fetal anomaly scan: videotaped exploration of physician's attitude and patient's satisfaction
  112. High Prevalence of Mutations in the Microtubule-Associated Protein Tau in a Population Study of Frontotemporal Dementia in the Netherlands
  113. Predicting adaptation to presymptomatic DNA testing for late onset disorders: who will experience distress? Rotterdam Leiden Genetics Workgroup.
  114. Distress in individuals facing predictive DNA testing for autosomal dominant late-onset disorders: Comparing questionnaire results with in-depth interviews
  115. Subtle involuntary movements are not reliable indicators of incipient Huntington's disease
  116. Course of Distress Experienced by Persons at Risk for an Autosomal Dominant Inheritable Disorder Participating in a Predictive Testing Program
  117. Early Cognitive and Motor Symptoms in Identified Carriers of the Gene for Huntington Disease
  118. DNA testing for fragile X syndrome: implications for parents and family.
  119. Screening and Diagnosis for the Fragile X Syndrome among the Mentally Retarded: An Epidemiological and Psychological Survey
  120. BRCA1 in the family: A case description of the psychological implications
  121. Intelligence indices in people with a high/low risk for developing Huntington's disease.
  122. Psychological distress in applicants for predictive DNA testing for autosomal dominant, heritable, late onset disorders. The Rotterdam/Leiden Genetics Workgroup.
  123. Psychological consequences of presymptomatic testing for Huntington's disease
  124. Hereditary frontotemporal dementia is linked to chromosome 17q21?q22: A genetic and clinicopathological study of three dutch families
  125. Three-year follow-up after presymptomatic testing for Huntington's disease in tested individuals and partners.
  126. Preparing for presymptomatic DNA testing for early onset Alzheimer's disease/cerebral haemorrhage and hereditary Pick disease.
  127. Three-year follow-up after presymptomatic testing for Huntington's disease in tested individuals and partners.
  128. Preliminary experience with predictive testing for insulin-dependent diabetes mellitus
  129. Psychological effects of presymptomatic DNA testing for Huntingtonʼs disease in the Dutch program.
  130. Presymptomatic DNA testing for Huntington disease: Identifying the need for psychological intervention
  131. On attitudes and appreciation 6 months after predictive DNA testing for huntington disease in the Dutch program
  132. Presymptomatic DNA-testing for Huntington disease: Pretest attitudes and expectations of applicants and their partners in the Dutch program
  133. Attitudes of Dutch general practitioners towards presymptomatic DNA-testing for Huntington disease
  134. Understanding the low uptake of presymptomatic DNA testing for Huntington's disease
  135. DNA-Testing for Huntington's disease in The Netherlands: A retrospective study on psychosocial effects
  136. Testing for Huntington's disease with support for all parties