Would you like to participate in a research study for severe Hemophilia A?
We are inviting you to take part in a research study for adult patients with severe Hemophilia A.
The study will involve two separate one-on-one telephone interviews, at least 2 days apart.
The purpose of this study is to better understand your experiences living with severe Hemophilia A, including the symptoms you experience, the impact of severe Hemophilia A on your quality of life, and what aspects are important to you. You will also be asked for your feedback via a questionnaire.
You may qualify for the study if:- You are over the age of 18
- You have severe Hemophilia A
If you are eligible, and choose to participate, you will receive $125 for the first interview and $150 for the second interview, for a total of $275. Payments will be made by gift card/voucher. If you have completed the first interview and decide to withdraw from the study for the second interview, you will still receive payment for completing the first interview.
Note that the slots to participate in the second interview are limited, so not all participants signing up will be able to participate in the second interview as well.
About the Study
Up to 20 participants will be invited to take part in the study. These participants will be patients with severe Hemophilia A.
If you decide to join this study, you will be asked to participate in two separate one-on-one telephone interviews, at least 2 days apart. The first will be a 60-minute concept elicitation (CE) interview. During the interview, a member of the study team will ask you questions about your experiences with severe Hemophilia A, including how severe Hemophilia A has affected different aspects of your life and how you make severe Hemophilia A treatment decisions. The second interview will be a 90-minute combined concept elicitation/cognitive debriefing (CE/CI) interview. The interview will explore patients’ perception on the symptoms and impacts associated with severe Hemophilia A. The interviewer will then read aloud a questionnaire and ask you for your answers.
Note that for the second interview only 10 out of the 20 participants will be invited, so it could be that you will only be able to participate in the first interview.
After completing the interview, you will be asked to complete a questionnaire about the interview. These questions will be on topics such as:
- The clarity and meaning of the questions
- The relevance of the questions
If you choose to participate, you will receive $125 for the first interview and $150 for the second interview, for a total of $275. Payments will be made by gift card/voucher. If you have completed the first interview and decide to withdraw from the study for the second interview, you will still receive payment for completing the first interview. Payments will be made by gift card/voucher.
Who can take part in the Study?
You may be able to take part in the study if:
- You are over the age of 18
- You have severe Hemophilia A
The purpose of this study is to better understand your experiences living with severe Hemophilia A, including the symptoms you experience, the impact of Hemophilia A on your quality of life, and what aspects are important to you. You will also be asked for your feedback via a questionnaire. The research team will be able to tell you more about whether you may qualify for the study.
Sign Up
What happens if I sign up? We will match you to the study for participants with severe Hemophilia A. The study team will then contact you and you may have the opportunity to participate if you are eligible.
If you think you might like to participate in the study or would like more information, please enter your details below. With your information, we can see if you may qualify and contact you about the study. Keep in mind that participation is entirely voluntary. If you do decide to take part in this study, you may change your mind about participating at any time.
The information you are providing here will only be used to see if you may be eligible for a research study for those diagnosed with severe Hemophilia A. We will only contact you if you are eligible, agree to be contacted and would like to participate. Please note the information you enter will be kept private, except when ordered by law, and only accessible to our Clinical Research Partners and affiliates and applicable regulatory agencies. If you have any questions regarding the handling of the information you have provided, or if you would like to make any changes to your responses, please contact us at info@autocruitment.com, and quote reference number 0439/0142.
Frequently Asked Questions
What is the goal of this study?
The goal of the study is to better understand your experiences living with severe Hemophilia A, including the symptoms you experience, the impact of severe Hemophilia A on your quality of life, and what aspects are important to you. You will also be asked for your feedback on one questionnaire, the Haemo-QoL-A.
Who will have the option of joining this study?
You will have the option of joining the study if you are aged 18 or older and have severe Hemophilia A.
How many people will take part in this study?
Up to 20 participants will take part in the study. Only 10 of these will participate in both interviews. These participants will be patients with severe Hemophilia A.
If you agree to join this study, what would you need to do?
If you decide to join this study, you will be asked to participate in up to two separate one-on-one telephone interviews, at least 2 days apart. The first will be a 60-minute concept elicitation (CE) interview (applicable to all patients selected). During the interview, a member of the study team will ask you questions about your experiences with severe Hemophilia A, including how severe Hemophilia A has affected different aspects of your life and how you make severe Hemophilia A treatment decisions. The second interview will be a 90-minute combined concept elicitation/cognitive debriefing (CE/CI) interview (only available for 10 out of the 20 patients participating). The interview will explore patients’ perception on the symptoms and impacts associated with severe Hemophilia A. The interviewer will then read aloud a questionnaire and ask you for your answers. After completing the questionnaire, you will be asked questions about the questionnaire. These questions will be on topics such as:
- The clarity and meaning of the questions
- The relevance of the questions
What are the potential harms or risks if you join this study?
There is no anticipated risk of physical harm related to participating in this study. You will not be receiving any medical treatments as a part of this study. There may be a risk of loss of confidentiality if you mention names in the course of the interview. Study staff will make every effort to protect confidentiality including assigning you a study ID that will be used instead of your name on all of your study documents, and any identifiable information in the transcript of the interview will be removed. You may feel uncomfortable answering some of the questions. However, you do not have to answer any questions that make you feel uncomfortable.
What are the potential benefits if you join this study?
There is no direct benefit to you. However, information learned from the study may help researchers better understand how to help individuals who experience severe Hemophilia A.
Will you receive any payment for being in this study?
For participation, you will receive $125 for the first interview and $150 for the second interview (if applicable), for a total of up to $275. If you have completed the first interview and decide to withdraw from the study for the second interview, you will still receive payment for completing the first interview. Payments will be made by gift card/voucher. You will receive payment within 3 weeks following the interview.