GET INVOLVED
We invite you to take part in a survey on the use of any drug or device for yourself or your child that you used under the guidance of your medical team or on your own initiative. This study is being conducted by Eurordis, under the guidance of the DITA Task Force. Approval for this survey has been obtained from the DITA task force. This study received a positive opinion from the INSERM Ethics Evaluation Committee /IRB00003888 on 9 June 2015.
We are conducting this internet-based survey in an effort to better understand how well you were/are engaged in medical care, including your relationship with your health care provider, your understanding of the therapy (its efficacy, possible difficulties, benefits as you see them), reasons why you agreed to take this therapy, as well as if you were satisfied with the information you were given. This study is an effort to understand your role as a patient in the decision making process around your treatments.
By completing this survey, you are verifying that you are 15 years old or older.
This survey will take about 30 minutes to complete. You may skip any question that you do not wish to answer, but the more you complete, the more complete our results can be. Once you hit send, you cannot access the same survey again, so please have approx. 30 minutes available when starting. At the end, please hit submit. Otherwise, your story will not be told. The final questions are about the Patient Information leaflet that comes with the treatment, please have that available when answering questions 22 - 38.
Your participation is entirely voluntary and there will be no negative consequences to you if you do not participate.
Your responses will be kept in full respect of confidentiality, used only by Eurordis and not shared with third parties. The survey does not require entry of any information that could be used to identify you. Only a code number will identify your responses. We use your internet identification only to detect duplicates. All electronic data will be stored on a password-protected server. Data will be recorded anonymously and transmitted over the internet using industry-standard SSL encryption technology (the same technology used for online banking). We recommend that you close your web browser after completing the survey.
We will ask you about your age, gender, and country of residence so we can make general descriptions of respondents for the survey results.
The only risk perceived by you may be the memory of an issue that was difficult when it happened to you.
Please complete this survey once for each treatment taken.
We hope that with the information you provide us will help dialog with the regulatory authorities on the best use of information and medicines and medical devices, and adapt policies if relevant, at both a European and national level. Possible outcomes will be presented on the Eurordis website at http://www.eurordis.org/about-orphan-drugs in 7 languages, on Eurordis enews at http://www.eurordis.org/enews and at relevant Rare Disease meetings. We will also try to publish results in a relevant scientific journal.
You may contact the DITA team by emailing: rob.camp@eurordis.org.
Remember, no information you share now or in the future will be connected specifically with you. You are in charge.
Thank you for taking the time to complete the survey. Your participation is extremely important to its success.This survey received funding under an operating grant from the European Union’s Health Programme (2014-2020).
The Consumers, Health, Agriculture and Food Executive Agency (CHAFEA)
We are conducting this internet-based survey in an effort to better understand how well you were/are engaged in medical care, including your relationship with your health care provider, your understanding of the therapy (its efficacy, possible difficulties, benefits as you see them), reasons why you agreed to take this therapy, as well as if you were satisfied with the information you were given. This study is an effort to understand your role as a patient in the decision making process around your treatments.
By completing this survey, you are verifying that you are 15 years old or older.
This survey will take about 30 minutes to complete. You may skip any question that you do not wish to answer, but the more you complete, the more complete our results can be. Once you hit send, you cannot access the same survey again, so please have approx. 30 minutes available when starting. At the end, please hit submit. Otherwise, your story will not be told. The final questions are about the Patient Information leaflet that comes with the treatment, please have that available when answering questions 22 - 38.
Your participation is entirely voluntary and there will be no negative consequences to you if you do not participate.
Your responses will be kept in full respect of confidentiality, used only by Eurordis and not shared with third parties. The survey does not require entry of any information that could be used to identify you. Only a code number will identify your responses. We use your internet identification only to detect duplicates. All electronic data will be stored on a password-protected server. Data will be recorded anonymously and transmitted over the internet using industry-standard SSL encryption technology (the same technology used for online banking). We recommend that you close your web browser after completing the survey.
The only risk perceived by you may be the memory of an issue that was difficult when it happened to you.
Please complete this survey once for each treatment taken.
We hope that with the information you provide us will help dialog with the regulatory authorities on the best use of information and medicines and medical devices, and adapt policies if relevant, at both a European and national level. Possible outcomes will be presented on the Eurordis website at http://www.eurordis.org/about-orphan-drugs in 7 languages, on Eurordis enews at http://www.eurordis.org/enews and at relevant Rare Disease meetings. We will also try to publish results in a relevant scientific journal.
You may contact the DITA team by emailing: rob.camp@eurordis.org.
Remember, no information you share now or in the future will be connected specifically with you. You are in charge.
Thank you for taking the time to complete the survey. Your participation is extremely important to its success.
The Consumers, Health, Agriculture and Food Executive Agency (CHAFEA)
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