EUCERD Recommendations on Core Indicators (2013)

The «EUCERD Recommendations on Core Indicators for Rare Disease National Plans/Strategies» were derived from the initial set of 59 Indicators from EUROPLAN I project, organised as process and outcome indicators. While all indicators were considered relevant, from an operational perspective, they were quite numerous and difficult to handle.

They are needed:
  • for a good vision across 27 MSs and on long term so to monitor process and progress of common policies on Rare Diseases;
  • potentially useful for the EC Report of end 2013;
  • surely useful for the annual EUCERD State of Art of Rare Diseases.

The current selection of Core Indicators is the result of the work carried out by EUROPLAN 2012-2015, organised in the following procedural steps.

1 DECEMBER 2012 - 14 FEBRUARY 2013

Work was planned within the “EUCERD Joint Action: Working for Rare Diseases (2012-2015)" to derive a selection of core indicators based on their usefulness and feasibility within the activities of its Work Package 4 “EUROPLAN 2012-2015", coordinated by the ISS (Istituto Superiore di Sanità-ISS, Italy). Two independent methodologies were used for selecting a limited number of indicators (“Core indicators") starting from the initial set of 59 Indicators:
  • Delphi process (carried out by the ISS) with the following participants: Ministry of Health representatives of 27 MS, 10 EURORDIS Advisors and 4 experts.
  • EURORDIS approach (carried out by EURORDIS, the European Organisation for Rare Diseases, partner in WP4 of the EUCERD Joint Action) with the following participants: 8 EURORDIS National Conference Advisors in conjunction with their Ministry of Health lead contacts on national plans/strategies.


The process to prepare these Recommendations (including the composition of the drafting group) was presented during the 7th EUCERD meeting by Yann Le Cam and Domenica Taruscio.

20 FEBRUARY 2013

The drafting group elaborated the first draft of the Recommendations, comparing and merging the results from the two methodologies (Delphi process and EURORDIS approach) to select the list of the highest scoring indicators, plus the suggestions of the drafting group members. This first draft has been circulated among Ministry of Health representatives of 27 MS, 10 EURORDIS Advisors and 4 experts; their comments and amendments were included for the preparation of the second draft.

25 MARCH 2013

the second draft was discussed during the EUROPLAN Workshop “Key Indicators for National Plans" (ISS, Rome, 25th March 2013) and amended by the participants (Ministry of Health representatives of MS, EURORDIS Advisors and experts).

27 MARCH 2013

The third draft, a result of the joint work of ISS and EURORDIS teams taking into account modifications and suggestions made by participants during the Workshop, was circulated amongst the Workshop participants (the deadline for receiving comments was 10th April 2013).

17 APRIL 2013

The fourth draft, a result of the joint work by ISS and EURORDIS teams taking into account modifications and suggestions to the third draft made by participants after the Workshop, was circulated among the EUCERD Members (the deadline for receiving comments is 28 April 2013).

3 MAY 2013

the fifth draft was elaborated, taking into account the numerous suggestions made by the EUCERD Members, and circulated to the EUCERD Members. The fifth draft is on the agenda of the meeting (5-6 June 2013) for adoption.

5-6 JUNE 2013

EUCERD adopted the Recommendations on Core Indicators for National Plans/Strategies for Rare Diseases in its 8th meeting.