WP5 Patients, Parents & Ethics: Resources

WP5 Members:

Martine Cools (WP Lead)Ghent, BEUniversity of Ghent
Arlene Smyth (WP deputy)Glasgow, UKTurners Syndrom Support Society
Willem StaelsGhent, BEUniversity of Ghent
Sabina GainottiRome, ITIstituto Superiore di Sanità
Petra BruggmanDENetwork Pituitary Gland and Adrenal Gland Diseases. European MEN Alliance,
Johan De GraafNLDutch Hypophysis Foundation
Dirk Van GenechtenBENet & Men Cancer

WP5 Deliverables:

DeliverableTitleEstimated Delivery DateStatus
D5.1 Report on the needs of patients in registries 31 Jan 2019
D5.2 Report on existing registries 31 Jul 2019
D5.3 Report on the patients perspectives on the use of PRO tool in Core Endocrine Registry 31 Jan 2020
D5.4 Report on the patients perspectives on the use of a Core Endocrine Registry for assessing generic and condition specific PCOMs 31 Jan 2021

WP5 Meetings:

  • 23 April 2018: WP5 face-to-face meeting, Machelen, Belgium. To view the minutes, please log in to the Project Governign Board Members’ Area.

WP5 Resources:

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