OpenLegislation

Division 4 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:F1

United Kingdom

Original text. Later amendments are not shown.

  1. (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:

    1. (i)

      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 find patients suitable for scientific research;

    2. (ii)

      if the patient's disease or condition is found relevant for a specific scientific research project, the patient may be contacted for this specific scientific research project, in order to obtain the patient's consent to her/his data being used for that scientific research project;

  2. (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.

Annotations

Textual amendments

F1

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).