Share and protect our health data: an evidence based approach to rare disease patients’ perspectives on data sharing and data protection - quantitative survey and recommendations

Ethical concerns on sharing genomic data including patients’ family members

(2018) Kyoko Takashima et al.   BMC Medical Ethics

RD-Connect, NeurOmics and EURenOmics: collaborative European initiative for rare diseases

(2018) Hanns Lochmüller et al.   EUROPEAN JOURNAL OF HUMAN GENETICS

Big data phenotyping in rare diseases: some ethical issues

(2018) Nina Hallowell et al.   GENETICS IN MEDICINE

The ethics conundrum in Recall by Genotype (RbG) research: Perspectives from birth cohort participants

(2018) Joel T. Minion et al.   PLoS One

Laboratory and clinical genomic data sharing is crucial to improving genetic health care: a position statement of the American College of Medical Genetics and Genomics

(2017) ACMG Board of Directors   GENETICS IN MEDICINE

Evolving health care through personal genomics

(2017) Heidi L. Rehm   NATURE REVIEWS GENETICS

The challenge of consent in clinical genome-wide testing

(2016) Katherine Burke et al.   ARCHIVES OF DISEASE IN CHILDHOOD

‘You should at least ask’. The expectations, hopes and fears of rare disease patients on large-scale data and biomaterial sharing for genomics research

(2016) Pauline McCormack et al.   EUROPEAN JOURNAL OF HUMAN GENETICS

Improving the informed consent process in international collaborative rare disease research: effective consent for effective research

(2016) Sabina Gainotti et al.   EUROPEAN JOURNAL OF HUMAN GENETICS

Patient Perspectives on Sharing Anonymized Personal Health Data Using a Digital System for Dynamic Consent and Research Feedback: A Qualitative Study

(2016) Karen Spencer et al.   JOURNAL OF MEDICAL INTERNET RESEARCH

The partnership of patient advocacy groups and clinical investigators in the rare diseases clinical research network

(2016) Peter A. Merkel et al.   Orphanet Journal of Rare Diseases

The context for the thematic grouping of rare diseases to facilitate the establishment of European Reference Networks

(2016) Teresinha Evangelista et al.   Orphanet Journal of Rare Diseases

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

(2015) Sylviane Darquy et al.   EUROPEAN JOURNAL OF HUMAN GENETICS

Sharing by design: Data and decentralized commons

(2015) J. L. Contreras et al.   SCIENCE

NIH's genomic data sharing policy: timing and tradeoffs

(2015) Jorge L. Contreras   TRENDS IN GENETICS

Anonymising and sharing individual patient data

(2015) K. El Emam et al.   BMJ-British Medical Journal

Anonymising and sharing individual patient data

(2015) K. El Emam et al.   BMJ-British Medical Journal

RD-Connect: An Integrated Platform Connecting Databases, Registries, Biobanks and Clinical Bioinformatics for Rare Disease Research

(2014) Rachel Thompson et al.   JOURNAL OF GENERAL INTERNAL MEDICINE

Understanding Evidence-Based Public Health Policy

(2009) Ross C. Brownson et al.   AMERICAN JOURNAL OF PUBLIC HEALTH

Clinical research for rare disease: Opportunities, challenges, and solutions

(2008) Robert C. Griggs et al.   MOLECULAR GENETICS AND METABOLISM