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EUCERD CORE INDICATORS
The following list of the Core indicators is proposed to all EU Member States so as to monitor their National Plans or Strategies
on Rare Diseases.
BACKGROUND INDICATORS (PREPARATION OF THE PLAN/STRATEGY)
1.
Existence of regulations/laws, or equivalent official national decisions that support the establishment and development
of a Rare Diseases (RD) plan
2.
Existence of a RD advisory committee
3.
Permanent and official patients’ representation in plan development, monitoring and assessment
4.
Adoption of the EU RD definition
CONTENT INDICATORS
Centres of Expertise
5.
Existence of a national policy for establishing Centres of Expertise on RD
6.
Number of national and regional Centres of Expertise adhering to the national policy
7.
Participation of national or regional Centres of Expertise in European Reference Networks
Information
8.
NP/NS support to the development of/participation in a comprehensive national and/or regional RD information
system
9.
Existence of Help lines for RD
10.
Knowledge, classification/coding, registries and research
11.
Existence of a national policy on rare disease clinical practice guideline development and implementation
12.
Type of classification/coding used by the health care system
13.
Existence of a national policy on registries or data collection on RD
14.
Existence of RD research programmes and/or projects in the country
15.
Participation in European and international research initiatives
Therapies
16.
Number of Orphan Medical Products (OMPs) with a European Union marketing authorisation and available in the
country (i.e. priced and reimbursed or directly supplied by the national health system)
17.
Existence of a governmental system for compassionate use of medicinal products Social services
18.
Existence of programmes to support the integration of RD patients in their daily life
FINANCIAL SUPPORT INDICATORS (IMPLEMENTATION OF THE PLAN/STRATEGY)
19.
Existence of a policy/decision to ensure long-term sustainability of the RD plan/strategy
20.
Amount of public funds allocated to the RD plan/strategy
21.
Specific public funds allocated for RD research
22.
Public funds specifically allocated for RD research actions/projects per year since the plan started
