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
Radmila KosicBelgrade, RSHealth Center “Zvezdara”?
Johan De GraafNLDutch Hypophysis Foundation
Dirk Van GenechtenBENet & Men Cancer

WP5 Deliverables:

DeliverableTitleEstimated Delivery DateStatus
D5.1Report on the needs of patients in registries31 Jan 2019
D5.2Report on existing registries31 Jul 2019 
D5.3Report on the patients perspectives on the use of PRO tool in Core Endocrine Registry31 Jan 2020 
D5.4Report on the patients perspectives on the use of a Core Endocrine Registry for assessing generic and condition specific PCOMs31 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:

We want your feedback!

Click here to access the draft documents in open consultation.

Please provide feedback before 4th September 2019.

Contact or provide feedback