Enabling global clinical collaborations on identifiable patient data: The Minerva initiative

Christoffer Nellåker; Fowzan S. Alkuraya; Gareth Baynam; Raphael Bernier; Francois P. Bernier; Vanessa Boulanger; Michael Brudno; Han G. Brunner; Jill Clayton-Smith; Benjamin Cogné; Hugh J. Dawkins; Bert DeVries; Sofia Douzgou; Tracy Dudding; Evan E. Eichler; Michael Ferlaino; Karen Fieggen; Helen V. Firth; David R. FitzPatrick; Dylan Gration; Tudor Groza; Melissa A. Haendel; Nina Hallowell; Ada Hamosh; Jayne Hehir-Kwa; Marc Phillip Hitz; Mark Hughes; Usha Kini; Tjitske Kleefstra; R. Frank Kooy; Peter M. Krawitz; Sébastien Küry; Melissa Lees; Gholson J. Lyon; Stanislas Lyonnet; Julien Marcadier; Stephen Meyn; Veronika Moslerová; Juan M. Politei; Cathryn C. Poulton; F. Lucy Raymond; Margot Reijnders; Peter N. Robinson; Corrado Romano; Catherine M. Rose; David C. Sainsbury; Lyn Schofield; Vernon R. Sutton; Marek Turnovec; Anke Van Dijck; Hilde Van Esch; Andrew O. Wilkie

doi:10.3389/fgene.2019.00611

Enabling global clinical collaborations on identifiable patient data: The Minerva initiative

Christoffer Nellåker, Fowzan S. Alkuraya, Gareth Baynam, Raphael Bernier, Francois P. Bernier, Vanessa Boulanger, Michael Brudno, Han G. Brunner, Jill Clayton-Smith, Benjamin Cogné, Hugh J. Dawkins, Bert DeVries, Sofia Douzgou, Tracy Dudding, Evan E. Eichler, Michael Ferlaino, Karen Fieggen, Helen V. Firth, David R. FitzPatrick, Dylan GrationTudor Groza, Melissa A. Haendel, Nina Hallowell, Ada Hamosh, Jayne Hehir-Kwa, Marc Phillip Hitz, Mark Hughes, Usha Kini, Tjitske Kleefstra, R. Frank Kooy, Peter M. Krawitz, Sébastien Küry, Melissa Lees, Gholson J. Lyon, Stanislas Lyonnet, Julien Marcadier, Stephen Meyn, Veronika Moslerová, Juan M. Politei, Cathryn C. Poulton, F. Lucy Raymond, Margot Reijnders, Peter N. Robinson, Corrado Romano, Catherine M. Rose, David C. Sainsbury, Lyn Schofield, Vernon R. Sutton, Marek Turnovec, Anke Van Dijck, Hilde Van Esch, Andrew O. Wilkie

School of Medicine

Research output: Contribution to journal › Comment/debate › peer-review

4 Scopus citations

Original language	English (US)
Article number	611
Journal	Frontiers in Genetics
Volume	10
Issue number	JUN
DOIs	https://doi.org/10.3389/fgene.2019.00611
State	Published - 2019

Keywords

Consortium
Data protection
Data sharing
Facial features
Patient information
Phenotyping
Rare disease

ASJC Scopus subject areas

Molecular Medicine
Genetics
Genetics(clinical)

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10.3389/fgene.2019.00611

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Nellåker, C., Alkuraya, F. S., Baynam, G., Bernier, R., Bernier, F. P., Boulanger, V., Brudno, M., Brunner, H. G., Clayton-Smith, J., Cogné, B., Dawkins, H. J., DeVries, B., Douzgou, S., Dudding, T., Eichler, E. E., Ferlaino, M., Fieggen, K., Firth, H. V., FitzPatrick, D. R., ... Wilkie, A. O. (2019). Enabling global clinical collaborations on identifiable patient data: The Minerva initiative. Frontiers in Genetics, 10(JUN), Article 611. https://doi.org/10.3389/fgene.2019.00611

Nellåker, C, Alkuraya, FS, Baynam, G, Bernier, R, Bernier, FP, Boulanger, V, Brudno, M, Brunner, HG, Clayton-Smith, J, Cogné, B, Dawkins, HJ, DeVries, B, Douzgou, S, Dudding, T, Eichler, EE, Ferlaino, M, Fieggen, K, Firth, HV, FitzPatrick, DR, Gration, D, Groza, T, Haendel, MA, Hallowell, N, Hamosh, A, Hehir-Kwa, J, Hitz, MP, Hughes, M, Kini, U, Kleefstra, T, Kooy, RF, Krawitz, PM, Küry, S, Lees, M, Lyon, GJ, Lyonnet, S, Marcadier, J, Meyn, S, Moslerová, V, Politei, JM, Poulton, CC, Raymond, FL, Reijnders, M, Robinson, PN, Romano, C, Rose, CM, Sainsbury, DC, Schofield, L, Sutton, VR, Turnovec, M, Van Dijck, A, Van Esch, H & Wilkie, AO 2019, 'Enabling global clinical collaborations on identifiable patient data: The Minerva initiative', Frontiers in Genetics, vol. 10, no. JUN, 611. https://doi.org/10.3389/fgene.2019.00611

@article{12355385131743529a3dc3b1c6897894,

title = "Enabling global clinical collaborations on identifiable patient data: The Minerva initiative",

keywords = "Consortium, Data protection, Data sharing, Facial features, Patient information, Phenotyping, Rare disease",

author = "Christoffer Nell{\aa}ker and Alkuraya, {Fowzan S.} and Gareth Baynam and Raphael Bernier and Bernier, {Francois P.} and Vanessa Boulanger and Michael Brudno and Brunner, {Han G.} and Jill Clayton-Smith and Benjamin Cogn{\'e} and Dawkins, {Hugh J.} and Bert DeVries and Sofia Douzgou and Tracy Dudding and Eichler, {Evan E.} and Michael Ferlaino and Karen Fieggen and Firth, {Helen V.} and FitzPatrick, {David R.} and Dylan Gration and Tudor Groza and Haendel, {Melissa A.} and Nina Hallowell and Ada Hamosh and Jayne Hehir-Kwa and Hitz, {Marc Phillip} and Mark Hughes and Usha Kini and Tjitske Kleefstra and Kooy, {R. Frank} and Krawitz, {Peter M.} and S{\'e}bastien K{\"u}ry and Melissa Lees and Lyon, {Gholson J.} and Stanislas Lyonnet and Julien Marcadier and Stephen Meyn and Veronika Moslerov{\'a} and Politei, {Juan M.} and Poulton, {Cathryn C.} and Raymond, {F. Lucy} and Margot Reijnders and Robinson, {Peter N.} and Corrado Romano and Rose, {Catherine M.} and Sainsbury, {David C.} and Lyn Schofield and Sutton, {Vernon R.} and Marek Turnovec and {Van Dijck}, Anke and {Van Esch}, Hilde and Wilkie, {Andrew O.}",

note = "Funding Information: This work was supported by MRC Fellowship MR/M014568/1 to CN and MRC Grant MR/M01326X/1 for MF. RFK and AVD are supported by grants from the ERA-NET NEURON through the Research Foundation – Flanders (FWO). EEE is supported by NIH 5R01MH101221 and as an investigator of Howard Hughes Medical Institute. CR acknowledges funding by the Italian Ministry of Health, Project RC2019 No. 2751604. Funding Information: We would like to thank the patients and families who have participated on Minerva&Me and with all Minerva Initiative-associated studies. This work was supported by MRC Fellowship MR/M014568/1 to CN, MRC Grant MR/M01326X/1 for MF, and VRS supported by NIH 5UM1HG006542.",

year = "2019",

doi = "10.3389/fgene.2019.00611",

language = "English (US)",

volume = "10",

journal = "Frontiers in Genetics",

issn = "1664-8021",

publisher = "Frontiers Media S. A.",

number = "JUN",

}

TY - JOUR

T1 - Enabling global clinical collaborations on identifiable patient data

T2 - The Minerva initiative

AU - Nellåker, Christoffer

AU - Alkuraya, Fowzan S.

AU - Baynam, Gareth

AU - Bernier, Raphael

AU - Bernier, Francois P.

AU - Boulanger, Vanessa

AU - Brudno, Michael

AU - Brunner, Han G.

AU - Clayton-Smith, Jill

AU - Cogné, Benjamin

AU - Dawkins, Hugh J.

AU - DeVries, Bert

AU - Douzgou, Sofia

AU - Dudding, Tracy

AU - Eichler, Evan E.

AU - Ferlaino, Michael

AU - Fieggen, Karen

AU - Firth, Helen V.

AU - FitzPatrick, David R.

AU - Gration, Dylan

AU - Groza, Tudor

AU - Haendel, Melissa A.

AU - Hallowell, Nina

AU - Hamosh, Ada

AU - Hehir-Kwa, Jayne

AU - Hitz, Marc Phillip

AU - Hughes, Mark

AU - Kini, Usha

AU - Kleefstra, Tjitske

AU - Kooy, R. Frank

AU - Krawitz, Peter M.

AU - Küry, Sébastien

AU - Lees, Melissa

AU - Lyon, Gholson J.

AU - Lyonnet, Stanislas

AU - Marcadier, Julien

AU - Meyn, Stephen

AU - Moslerová, Veronika

AU - Politei, Juan M.

AU - Poulton, Cathryn C.

AU - Raymond, F. Lucy

AU - Reijnders, Margot

AU - Robinson, Peter N.

AU - Romano, Corrado

AU - Rose, Catherine M.

AU - Sainsbury, David C.

AU - Schofield, Lyn

AU - Sutton, Vernon R.

AU - Turnovec, Marek

AU - Van Dijck, Anke

AU - Van Esch, Hilde

AU - Wilkie, Andrew O.

N1 - Funding Information: This work was supported by MRC Fellowship MR/M014568/1 to CN and MRC Grant MR/M01326X/1 for MF. RFK and AVD are supported by grants from the ERA-NET NEURON through the Research Foundation – Flanders (FWO). EEE is supported by NIH 5R01MH101221 and as an investigator of Howard Hughes Medical Institute. CR acknowledges funding by the Italian Ministry of Health, Project RC2019 No. 2751604. Funding Information: We would like to thank the patients and families who have participated on Minerva&Me and with all Minerva Initiative-associated studies. This work was supported by MRC Fellowship MR/M014568/1 to CN, MRC Grant MR/M01326X/1 for MF, and VRS supported by NIH 5UM1HG006542.

PY - 2019

Y1 - 2019

KW - Consortium

KW - Data protection

KW - Data sharing

KW - Facial features

KW - Patient information

KW - Phenotyping

KW - Rare disease

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UR - http://www.scopus.com/inward/citedby.url?scp=85069047288&partnerID=8YFLogxK

U2 - 10.3389/fgene.2019.00611

DO - 10.3389/fgene.2019.00611

M3 - Comment/debate

C2 - 31417602

AN - SCOPUS:85069047288

SN - 1664-8021

VL - 10

JO - Frontiers in Genetics

JF - Frontiers in Genetics

IS - JUN

M1 - 611

ER -

Enabling global clinical collaborations on identifiable patient data: The Minerva initiative

Keywords

ASJC Scopus subject areas

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