{
  "url": "https://openlegislation.uk/eu-decision-2014-287",
  "json_url": "https://openlegislation.uk/eu-decision-2014-287.json",
  "id": "eudn/2014/287",
  "title": "Commission Implementing Decision of 10 March 2014 setting out criteria for establishing and evaluating European Reference Networks and their Members and for facilitating the exchange of information and expertise on establishing and evaluating such Networks (Text with EEA relevance) (2014/287/EU)",
  "short_title": "Commission Implementing Decision of 10 March 2014 setting out criteria for establishing and evaluating European Reference Networks and their Members and for facilitating the exchange of information and expertise on establishing and evaluating such Networks (2014/287/EU)",
  "long_title": "Commission Implementing Decision of 10 March 2014 setting out criteria for establishing and evaluating European Reference Networks and their Members and for facilitating the exchange of information and expertise on establishing and evaluating such Networks (Text with EEA relevance) (2014/287/EU)",
  "citation": "EU Decision 2014/287",
  "type": "eudn",
  "year": "2014",
  "number": "287",
  "version": "current",
  "date": "2014-03-10",
  "revised": false,
  "valid_from": null,
  "extent": "E+W+S+N.I.",
  "unapplied_effects": 0,
  "provisions": [
    {
      "path": "introduction",
      "kind": "introduction",
      "number": null,
      "heading": "Introductory text",
      "url": "https://openlegislation.uk/eu-decision-2014-287/introduction",
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": null
    },
    {
      "path": "chapter/I",
      "kind": "chapter",
      "number": "I",
      "heading": "GENERAL PROVISIONS",
      "url": null,
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": null
    },
    {
      "path": "article/1",
      "kind": "article",
      "number": "1",
      "heading": "Subject matter",
      "url": "https://openlegislation.uk/eu-decision-2014-287/article-1",
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": "chapter/I"
    },
    {
      "path": "article/1a",
      "kind": "article",
      "number": "1a",
      "heading": "Definitions",
      "url": "https://openlegislation.uk/eu-decision-2014-287/article-1a",
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": "chapter/I"
    },
    {
      "path": "chapter/II",
      "kind": "chapter",
      "number": "II",
      "heading": "ESTABLISHMENT OF EUROPEAN REFERENCE NETWORKS",
      "url": null,
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": null
    },
    {
      "path": "article/2",
      "kind": "article",
      "number": "2",
      "heading": "Call for interest to establish a European Reference Network",
      "url": "https://openlegislation.uk/eu-decision-2014-287/article-2",
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": "chapter/II"
    },
    {
      "path": "article/3",
      "kind": "article",
      "number": "3",
      "heading": "Membership applications",
      "url": "https://openlegislation.uk/eu-decision-2014-287/article-3",
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": "chapter/II"
    },
    {
      "path": "article/4",
      "kind": "article",
      "number": "4",
      "heading": "Technical assessment of applications",
      "url": "https://openlegislation.uk/eu-decision-2014-287/article-4",
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": "chapter/II"
    },
    {
      "path": "article/5",
      "kind": "article",
      "number": "5",
      "heading": "Approval of Networks and Members",
      "url": "https://openlegislation.uk/eu-decision-2014-287/article-5",
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": "chapter/II"
    },
    {
      "path": "article/6",
      "kind": "article",
      "number": "6",
      "heading": "Board of Member States",
      "url": "https://openlegislation.uk/eu-decision-2014-287/article-6",
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": "chapter/II"
    },
    {
      "path": "article/7",
      "kind": "article",
      "number": "7",
      "heading": "Logo",
      "url": "https://openlegislation.uk/eu-decision-2014-287/article-7",
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": "chapter/II"
    },
    {
      "path": "article/8",
      "kind": "article",
      "number": "8",
      "heading": "Applications for membership of existing Networks",
      "url": "https://openlegislation.uk/eu-decision-2014-287/article-8",
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": "chapter/II"
    },
    {
      "path": "article/9",
      "kind": "article",
      "number": "9",
      "heading": "Technical assessment of applications for membership of existing Networks",
      "url": "https://openlegislation.uk/eu-decision-2014-287/article-9",
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": "chapter/II"
    },
    {
      "path": "article/10",
      "kind": "article",
      "number": "10",
      "heading": "Approval of new Members",
      "url": "https://openlegislation.uk/eu-decision-2014-287/article-10",
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": "chapter/II"
    },
    {
      "path": "article/11",
      "kind": "article",
      "number": "11",
      "heading": "Termination of the Network",
      "url": "https://openlegislation.uk/eu-decision-2014-287/article-11",
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": "chapter/II"
    },
    {
      "path": "article/12",
      "kind": "article",
      "number": "12",
      "heading": "Loss of membership",
      "url": "https://openlegislation.uk/eu-decision-2014-287/article-12",
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": "chapter/II"
    },
    {
      "path": "article/13",
      "kind": "article",
      "number": "13",
      "heading": "Assessment manual",
      "url": "https://openlegislation.uk/eu-decision-2014-287/article-13",
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": "chapter/II"
    },
    {
      "path": "chapter/III",
      "kind": "chapter",
      "number": "III",
      "heading": "EVALUATION OF EUROPEAN REFERENCE NETWORKS",
      "url": null,
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": null
    },
    {
      "path": "article/14",
      "kind": "article",
      "number": "14",
      "heading": "Evaluation",
      "url": "https://openlegislation.uk/eu-decision-2014-287/article-14",
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": "chapter/III"
    },
    {
      "path": "article/15",
      "kind": "article",
      "number": "15",
      "heading": "Evaluation manual",
      "url": "https://openlegislation.uk/eu-decision-2014-287/article-15",
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": "chapter/III"
    },
    {
      "path": "chapter/IV",
      "kind": "chapter",
      "number": "IV",
      "heading": "EXCHANGE OF INFORMATION AND EXPERTISE",
      "url": null,
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": null
    },
    {
      "path": "article/15a",
      "kind": "article",
      "number": "15a",
      "heading": "Exchange of information and expertise among the Member States",
      "url": "https://openlegislation.uk/eu-decision-2014-287/article-15a",
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": "chapter/IV"
    },
    {
      "path": "article/16",
      "kind": "article",
      "number": "16",
      "heading": "Exchange of information on establishing and evaluating the Networks",
      "url": "https://openlegislation.uk/eu-decision-2014-287/article-16",
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": "chapter/IV"
    },
    {
      "path": "article/16a",
      "kind": "article",
      "number": "16a",
      "heading": "The Clinical Patient Management System",
      "url": "https://openlegislation.uk/eu-decision-2014-287/article-16a",
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": "chapter/IV"
    },
    {
      "path": "article/16b",
      "kind": "article",
      "number": "16b",
      "heading": "Personal data processed in the CPMS",
      "url": "https://openlegislation.uk/eu-decision-2014-287/article-16b",
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": "chapter/IV"
    },
    {
      "path": "article/16c",
      "kind": "article",
      "number": "16c",
      "heading": "Joint controllership of patients' personal data processed through the CPMS",
      "url": "https://openlegislation.uk/eu-decision-2014-287/article-16c",
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": "chapter/IV"
    },
    {
      "path": "chapter/V",
      "kind": "chapter",
      "number": "V",
      "heading": "FINAL PROVISIONS",
      "url": null,
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": null
    },
    {
      "path": "article/17",
      "kind": "article",
      "number": "17",
      "heading": "Revision",
      "url": "https://openlegislation.uk/eu-decision-2014-287/article-17",
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": "chapter/V"
    },
    {
      "path": "article/18",
      "kind": "article",
      "number": "18",
      "heading": "Entry into force",
      "url": "https://openlegislation.uk/eu-decision-2014-287/article-18",
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": "chapter/V"
    },
    {
      "path": "annex/I",
      "kind": "annex",
      "number": "I",
      "heading": "CONTENT OF THE APPLICATION TO ESTABLISH A NETWORK",
      "url": "https://openlegislation.uk/eu-decision-2014-287/annex-I",
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": null
    },
    {
      "path": "annex/II",
      "kind": "annex",
      "number": "II",
      "heading": "CONTENT OF THE MEMBERSHIP APPLICATION",
      "url": "https://openlegislation.uk/eu-decision-2014-287/annex-II",
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": null
    },
    {
      "path": "annex/III",
      "kind": "annex",
      "number": "III",
      "heading": "ALLOCATION OF RESPONSIBILITIES AMONG JOINT CONTROLLERS",
      "url": null,
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": null
    },
    {
      "path": "annex/III/division/1",
      "kind": "division",
      "number": "1",
      "heading": "The Commission shall be responsible for:",
      "url": "https://openlegislation.uk/eu-decision-2014-287/annex-III/division-1",
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": "annex/III"
    },
    {
      "path": "annex/III/division/2",
      "kind": "division",
      "number": "2",
      "heading": "Each healthcare provider authorised to access CPMS shall be responsible for:",
      "url": "https://openlegislation.uk/eu-decision-2014-287/annex-III/division-2",
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": "annex/III"
    },
    {
      "path": "annex/IV",
      "kind": "annex",
      "number": "IV",
      "heading": "Mandatory minimum requirements for the consent form to be provided by healthcare providers authorised to access CPMS",
      "url": null,
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": null
    },
    {
      "path": "annex/IV/division/1",
      "kind": "division",
      "number": "1",
      "heading": null,
      "url": "https://openlegislation.uk/eu-decision-2014-287/annex-IV/division-1",
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": "annex/IV"
    },
    {
      "path": "annex/IV/division/2",
      "kind": "division",
      "number": "2",
      "heading": "The consent form shall request the patient's explicit consent for sharing her/his personal data with one or more ERNs, with the sole purpose to improve her/his access to diagnosis and treatment and the provision of high-quality healthcare. To that end, it shall explain that:",
      "url": "https://openlegislation.uk/eu-decision-2014-287/annex-IV/division-2",
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": "annex/IV"
    },
    {
      "path": "annex/IV/division/3",
      "kind": "division",
      "number": "3",
      "heading": "The consent form may also request the patient's additional consent to her/his data being entered in registries or other databases for rare and low prevalence complex diseases, which serve scientific research, clinical or policy purposes. If consent is requested for this purpose, the consent form shall describe the concept and purpose of rare disease registries or databases and explain that:",
      "url": "https://openlegislation.uk/eu-decision-2014-287/annex-IV/division-3",
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": "annex/IV"
    },
    {
      "path": "annex/IV/division/4",
      "kind": "division",
      "number": "4",
      "heading": "The consent form may also request the patient's additional consent to being contacted by a Network Member who believes the patient could be suitable for a scientific research initiative, a specific scientific research project or parts of a scientific research project. If consent is requested for this purpose, the consent form shall explain that giving at this stage the consent to be contacted for scientific research purposes does not mean giving the consent for the patient's data to be used for a specific scientific research initiative, neither does it mean that the patient will in any event be contacted in connection with, or that the patient will be part of, a specific scientific research project and that:",
      "url": "https://openlegislation.uk/eu-decision-2014-287/annex-IV/division-4",
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": "annex/IV"
    },
    {
      "path": "annex/IV/division/5",
      "kind": "division",
      "number": "5",
      "heading": "The consent form shall explain the rights of the patient as regards her/his respective consent(s) to share personal data and in particular provide the information that the patient:",
      "url": "https://openlegislation.uk/eu-decision-2014-287/annex-IV/division-5",
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": "annex/IV"
    },
    {
      "path": "annex/IV/division/6",
      "kind": "division",
      "number": "6",
      "heading": null,
      "url": "https://openlegislation.uk/eu-decision-2014-287/annex-IV/division-6",
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": "annex/IV"
    },
    {
      "path": "annex/IV/division/7",
      "kind": "division",
      "number": "7",
      "heading": null,
      "url": "https://openlegislation.uk/eu-decision-2014-287/annex-IV/division-7",
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": "annex/IV"
    },
    {
      "path": "annex/IV/division/8",
      "kind": "division",
      "number": "8",
      "heading": "The consent form shall record separately the individual consent for each of the three different forms of data sharing in a specific, explicit and unambiguous way:",
      "url": "https://openlegislation.uk/eu-decision-2014-287/annex-IV/division-8",
      "extent": "E+W+S+N.I.",
      "status": null,
      "parent": "annex/IV"
    }
  ],
  "outstanding_effects": [],
  "provenance": {
    "source": "legislation.gov.uk",
    "source_url": "https://www.legislation.gov.uk/eudn/2014/287",
    "retrieved_at": "2026-10-31T17:52:46.487676+00:00"
  },
  "licence": "Open Government Licence v3.0",
  "licence_url": "https://www.nationalarchives.gov.uk/doc/open-government-licence/version/3/",
  "attribution": "Contains public sector information licensed under the Open Government Licence v3.0. Source: legislation.gov.uk, The National Archives."
}