Study Information
Title of Research Study:
Transition of Care in Patients with Epidermolysis Bullosa
Investigator Team Contact Information:
For questions about research appointments, the research study, research results, or other concerns, call the study team at:
Investigator Name:
Christina Boull, MD
Phone Number: 612-672-5932
Email Address: oehr0005@umn.edu
Study Staff:
Audrey Nguyen
Phone Number: 612-672-5932
Email Address: nguy3178@umn.edu
Supported By:
This research project is not funded.
What is research?
The goal of research is to learn new things in order to help people in the future. Investigators learn things by following the same plan with a number of participants, so they do not usually make changes to the plan for individual research participants. You, as an individual, may or may not be helped by volunteering for a research study.
Why am I being invited to take part in this research study?
Epidermolysis Bullosa (EB) is diagnosed and treated beginning in early childhood. The transition to adult primary care can be difficult for a patient and their family. As an adult who has EB or has a child with EB who is 12-17 years of age, your responses and experience may help researchers learn how to make a transition from pediatric specialists to adult care providers easier.
What should I know about a research study?
● Someone can explain this research study to you.
● Whether or not you take part is up to you.
● You can choose not to take part.
● You can agree to take part and later change your mind.
● Your decision will not be held against you.
● You can ask all the questions you want before you decide.
Why is this research being done?
The researchers for this study want to improve the care that EB patients receive as they become adults and are no longer seen by a pediatrician or pediatric specialist.
How long will the research last?
We expect that you will be in this research study for only as long as it takes for you to complete the 19 survey questions that follow.
How many people will be studied?
It is expected that 100 people will be in this research study. Adults (18+ years of age) who are able to understand English and follow English instructions are invited to participate.
What will I need to do to participate?
You will be asked to complete the on-line questions that follow to the best of your ability.
Is there any way that being in this study could be bad for me? There are no known risks to this anonymous survey.
Will being in this study help me in any way?
There are no benefits to you from your taking part in this research. We cannot promise any benefits to others from your taking part in this research. This is an anonymous survey and although you may be asked questions about your care or your child's care, those responses will not be communicated to your care team. If you have specific concerns about your care or your child's care, please contact your provider directly.
What happens if I do not want to be in this research?
If you are accessing the study materials on your own device, you may close your browser.
What happens if I say "Yes", but I change my mind later?
You can stop taking the survey at any time and not complete the remaining questions. You may stop participating in the research study at any time and no one will be upset by your decision.
Will it cost me anything to participate in this research study?
Taking part in this research study will not lead to any costs to you.
Confidentiality
We do not intend to collect names, addresses or other personal information that may identify you as a participant.
What happens to the information collected for the research?
Organizations that may inspect and copy study information include the Institutional Review Board (IRB), the committee that provides ethical and regulatory oversight of research, and other representatives of this institution, including those that have responsibilities for monitoring or ensuring compliance.
Will I be compensated for my participation?
No, there is no compensation for participating in this study.
Whom do I contact if I have questions, concerns or feedback about my experience?
To share feedback privately with the University of Minnesota Human Research Protection Program
(HRPP) about your research experience, call the Research Participants' Advocate Line at 612-625-1650
(Toll Free: 1-888-224-8636) or go to z.umn.edu/participants. You are encouraged to contact the HRPP if:
● Your questions, concerns, or complaints are not being answered by the research team.
● You cannot reach the research team.
● You want to talk to someone besides the research team.
● You have questions about your rights as a research participant.
● You want to get information or provide input about this research.
Will I have a chance to provide feedback after the study is over?
If you are not asked to complete a survey, but you would like to share feedback, please contact the study team or the HRPP. See the "Investigator Contact Information" of this form for study team contact information and "Whom do I contact if I have questions, concerns or feedback about my experience?" of this form for HRPP contact information.
By clicking below to start the first questionnaire, you grant consent to participate in this anonymous questionnaire study.
Thank you for your time!