Anna Kole

Empowerment of patients: lessons from the rare diseases community

Ségolène Aymé, Anna Kole, Stephen C. Groft · The Lancet · 2008 · 232 citations

Social Sciences, Health Policy, Health Equity +10

International Charter of principles for sharing bio-specimens and data

Deborah Mascalzoni, Edward S. Dove, Yaffa Rubinstein et al. · European Journal of Human Genetics · 2014 · 156 citations · Full text

Computing, Health Information Management, Data Ethics +16

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

Pauline McCormack, Anna Kole, Sabina Gainotti et al. · European Journal of Human Genetics · 2016 · 101 citations · Full text

Life Sciences, Bioinformatics, Health Informatics +15

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

Sabina Gainotti, Simon Woods, Anna Kole et al. · European Journal of Human Genetics · 2016 · 67 citations · Full text

Public Health, Clinical Sciences, Clinical Research Regulation +16

The added value of centres of expertise for rare disease patients in Europe

Anna Kole, Yann Le Cam · Orphanet Journal of Rare Diseases · 2010 · 13 citations · Full text

Nursing, Health Care Management, Health Systems +16