{
  "url": "https://openlegislation.uk/eu-decision-2014-287/annex-IV/division-3",
  "json_url": "https://openlegislation.uk/eu-decision-2014-287/annex-IV/division-3.json",
  "legislation": "eudn/2014/287",
  "legislation_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)",
  "legislation_url": "https://openlegislation.uk/eu-decision-2014-287",
  "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:",
  "text": "(a) if the consent is given, the patient's personal data will be processed by healthcare providers authorised to access CPMS respecting the following conditions:\n(i) only relevant data related to the patient's medical condition will be shared;\n(ii) healthcare professionals and other individuals affiliated to such healthcare providers who are entitled to have access to patients' data may run queries in the CPMS and create reports in order to identify similar patient cases;\n(b) if the consent is not given, it will by no means affect either the patient's care by the respective healthcare provider, or the fact that the Network will provide advice on diagnoses and treatment, at the request of the patient.",
  "extent": "E+W+S+N.I.",
  "status": null,
  "version": "current",
  "annotations": [
    {
      "type": "F",
      "label": "F1",
      "text": "Inserted by Commission Implementing Decision (EU) 2019/1269 of 26 July 2019 amending Implementing Decision 2014/287/EU 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)."
    }
  ],
  "outstanding_effects": [],
  "provenance": {
    "source": "legislation.gov.uk",
    "source_url": "https://www.legislation.gov.uk/eudn/2014/287/annex/IV/division/3",
    "retrieved_at": "2026-11-01T15:15:28.852722+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."
}