Empowering you with valuable information

Patient voice matters

The EU-X-CT initiative was born out of the unmet need of patients to participate in clinical trials abroad. An independent European research project with patient interviews and survey, identified financial, administrative, and legal burdens and lack of access to reliable information on cross-border clinical trials as the major challenges to enrolment.

We are currently gathering detailed information about the obstacles patients face when they want to enrol in a clinical trial in a foreign country. We are also mapping the existing legal, financial, and operational frameworks for conducting and participating in cross-border trials across European countries. Once the survey is complete and the results are analysed, the information will be made available for free on this website per country. All the members of EU-X-CT will collaborate on working out recommendations and guidance for patients, investigators and other involved parties on how best to overcome hurdles.

Meanwhile, if you are interested in joining a clinical trial in another country, please speak with your doctor and/or reach out to a patient organization in your country.

If you have a story to share about your experience with a cross-border clinical trial, we would love to hear from you!

Please reach out to us at eu-x-ct@efgcp.eu. Your insights and stories can significantly contribute to a more supportive community and help individuals navigating the complexities of cross-border clinical trials.

Information for patients and caregivers

Dear patient, dear caregiver,

You are interested in joining a clinical trial?

Here are suggestions on how to find useful information about clinical trials:

You are interested in joining a clinical trial in another country?

Here are questions that arise, clicking on them will show detailed information:

  • Please consult the doctor who is treating you and/or your local patient organisation as they may be able to help you and provide information.
  • This may also include information on whether you need a visa to enter and stay in the country in which you want to join the clinical study.
  • In principle, your local doctor does not have to approve your participation in a clinical trial in another country. However, you need to speak with him/her about your plans as he/she may be able to support you and give you further recommendations on what might be required to apply for reimbursement of trial-related costs by the local health insurance / national healthcare system.
  • Your local doctor may need to share your medical records with the study doctor in the country you want to go to. He/she may also be aware of technical problems with sharing medical records (such as the need for translation into the local language of the other country) or any legal issues, such as data privacy.
  • Health insurances / national healthcare systems handle this differently in different countries. Some are covering these costs, some do not, some cover up to a certain amount or cover only a certain percentage of the costs.
  • If your health insurance / national healthcare system is not covering your accommodation costs in the other country, you can ask the investigator of that study in the other country whether your accommodation costs are covered, for example by that hospital or the sponsor of the trial or the national healthcare system of the study doctor’s country.
  • There is a substantial risk that some or all of your costs for accommodation will have to be paid out of your own pocket.
  • Ask your health insurance / national healthcare system about their process of reimbursement of the costs they cover.
  • In some countries the patient’s health insurance / national healthcare system is covering the travel and accommodation costs of the accompanying person, in some countries not, or up to a certain amount or only a certain percentage of the costs.
  • In some countries the patient’s health insurance / national healthcare system is covering the travel insurance costs of the accompanying person, in some countries not.
  • If your health insurance / national healthcare system is not covering the travel and accommodation costs of the accompanying person you should ask the study doctor whether there is a possibility in that country to cover these costs.
  • Translation of certain trial documents into your language is requested by the responsible ethics committee, for informed consent form, instructions on how to take the study medication, patient diary, any questionnaires etc. These are usually provided by the clinical trial site but not always.
  • Translation of your medical records from your own language into the language of the study doctor’s country may be required.
  • The responsible ethics committee may require that the study doctor has an interpreter available for you to help you to talk to the study team and well understand all aspects of the study.
  • Is the study medication provided by the sponsor and will be sent to your home?
  • Does the study medication have no authorisation for being sold in the pharmacy in your country but has authorisation in another country and can be imported by your pharmacy from that other country?
  • Is the study medication authorised to be sold in the pharmacy in your country, but you will need to buy and pay it yourself in the pharmacy because your doctor is not allowed to prescribe it as it is not on your country’s reimbursement list?
  • In some countries the local health insurance / national healthcare system is covering such costs, in other countries not.
  • If there is no coverage of such costs in your country you could ask the study doctor whether there would be any possibility to get such costs covered for example through the study budget provided by the sponsor of the study or a study liability insurance.