WP5 Patients, Parents & Ethics: Resources

WP5 Members:

Martine Cools (WP Lead)Ghent, BEUniversity of Ghent
Arlene Smyth (WP deputy) Glasgow, UKTurners Syndrome Support Society
Willem Staels Ghent, BEUniversity of Ghent
Sabina Gainotti Rome, IT Istituto Superiore di Sanità
Petra Bruegmann DENetwork Pituitary Gland and Adrenal Gland Diseases. European MEN Alliance.
Johan De Graaf NL Dutch Hypophysis Foundation
Dirk Van Genechten BE Net & 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.
  • 21 June 2019: WP5 face-to-face meeting, Brussels, Belgium
  • To view the minutes, please log in to the Project Governing Board Members’ Area.

WP5 Resources:

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