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Development of clinical guidelines for rare and complex urogenital diseases

There is currently a lack of evidenced based, unbiased information on the different urogenital rare diseases. For healthcare professionals, eUROGEN will replicate and standardize best practice methodology, which will lead to improvements in the quality and effectiveness of care. eUROGEN aims to translate the clinical guidelines into information for patients in a clear and understandable way.

Clinical Practices Guidelines and Decision Support Tools Programme (CPG & CDST Programme)

A consortium of Health Technology Assessment (HTA) agencies plus other academic institutions with experience in the development of CPG and CDST and training and eLearning activities (called the Contractor henceforth) has been selected by the European Commission (EC) to assist the ERNs and their healthcare providers in this programme. The contract for the process of development, appraisal and implementation of CPGs and CDSTs is based on the terms of reference which can be found here.

On 6 February 2020 a workshop was organised by the EC in Brussels with the participation of all ERNs representatives and the Contractor to present and discuss the goals, timeline and actions foreseen in the CPG and CDST Programme including information on the Consortium.

The technical assistance that the Contractor will provide aims to build the capacity of the ERNs and their members to produce and adhere to high quality CPGs and CDSTs in their respective areas of expertise.

Please note that it is expected that the dates will be extended due to the coronavirus pandemic.

Date (2020)

WP

Comm Channel

Objective
February-March WP-B E-mail /EU Survey Consultation on CPGs and CDSTs Methodologies and Tools
February-March WP-C E-mail/EU Survey + videoconference Consultation on CPGs and CDSTs training needs
February-March WP-A E-mail Consultation on existing technical and/or scientific expert panels involved in the development, appraisal and implementation of CPGs and CDSTs.
May WP-D E-mail/ EU Survey Consultation on the goals, planning and intended timetable for the development and appraisal of CPGs and CDSTs
May-October WP-A E-mail + videoconference Consultation on the Expert Panels creation
July WP-C E-mail Consultation on the Physical Training  Courses attendance
September WP-C E-mail + phone call Confirmation for Physical Training  Courses attendance
October WP-C Face-to-face Face-to-face Training  Courses (Brussels)

 

ERN eUROGEN plans

The disease areas agreed by the ERN eUROGEN Network Board at their annual Strategic Board meeting in June 2019 for guidelines work are:

Full clinical guidelines in areas where none currently exist;

  • Ano-rectal malformations
  • Vesico vaginal fistulae

Clinicial Decision Support Making Tools (CDST):

  • Abdominopelvic Sarcomas
  • Melanoma effecting genitourinary tract
  • Groin node dissection

Collaborations with other ERNs:

  • ERKNet – CPSG on Cystinuria
  • ERKNet – CPSG on obstructive uropathy
  • ITHACA – spina bifida

Next steps
The Consortium will be invited to the ERN eUROGEN virtual annual Strategic Board meeting on 11 and 12 June 2020 to discuss collaboration.