A. Lapointe

Secondary findings from whole-exome/genome sequencing evaluating stakeholder perspectives. A review of the literature.

C. Lejeune, R. Boidot, J. Thevenon, 2019, European journal of medical genetics.

Exome sequencing in clinical settings: preferences and experiences of parents of children with rare diseases (SEQUAPRE study)

J. Rivière, S. Béjean, J. Thevenon, 2019, European Journal of Human Genetics.

Patient/family views on data sharing in rare diseases: study in the European LeukoTreat project

O. Boespflug-Tanguy, N. Duchange, S. Darquy, 2015, European Journal of Human Genetics.

Transition from child to adult health care for patients with lysosomal storage diseases in France: current status and priorities—the TENALYS study, a patient perspective survey

G. Chatellier, N. Belmatoug, A. Brassier, 2021, Orphanet Journal of Rare Diseases.

Guidelines for reporting secondary findings of genome sequencing in cancer genes: the SFMPP recommendations

S. Richard, O. Cussenot, A. Cambon-Thomsen, 2018, European Journal of Human Genetics.

Exome sequencing in clinical settings: preferences and experiences of parents of children with rare diseases (SEQUAPRE study)

J. Rivière, S. Béjean, J. Thevenon, 2019, European Journal of Human Genetics.

Secondary findings from next generation sequencing: Psychological and ethical issues. Family and patient perspectives.

L. Faivre, C. Thauvin-Robinet, O. Putois, 2019, European journal of medical genetics.

Guidelines for reporting secondary findings of genome sequencing in cancer genes: the SFMPP recommendations

S. Richard, O. Cussenot, A. Cambon-Thomsen, 2018, European Journal of Human Genetics.

Ethical management in the constitution of a European database for leukodystrophies rare diseases.

O. Boespflug-Tanguy, N. Duchange, S. Darquy, 2014, European journal of paediatric neurology : EJPN : official journal of the European Paediatric Neurology Society.

Patient/family views on data sharing in rare diseases: study in the European LeukoTreat project

O. Boespflug-Tanguy, N. Duchange, S. Darquy, 2015, European Journal of Human Genetics.