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Title of Research Study: Exploring the Perceptions of Adolescents and Young Adults with Sickle Cell Disease Regarding the Use of a mHealth Technology App to Support Their Transition from Pediatric to Adult Care and Adult Self-management Practices

Principal Investigator: Jamillah Mansaray/Doctoral Student

Department Affiliation: School of Health and Medical Sciences (SHMS), Seton Hall University

Sponsor: This research is supported by SHMS, Ph.D. in Health Sciences. 

Brief summary about this research study:
The following summary of this research study is to help you decide whether or not you want to participate in the study. You have the right to ask questions at any time. 

The purpose of this study is to explore in adolescents and young adults with sickle cell disease, their perceptions regarding mHealth technology app support when transitioning from pediatric to adult care and adult self-management practices as well as their behavioral intention to use it throughout adulthood.

You will be asked to complete a brief survey. First, you will be asked 3 questions which will tell you whether or not you meet the criteria to take part in this survey. If you do meet the criteria, you will be prompted to complete the rest of the survey. By accessing the link to the survey and completing it, you are giving consent to take part in this study.

We expect that you will be in this research study for 7 minutes.

The primary risk of participation is: There is no expected risk in taking part in the study.

The main benefit of participation is: There are no benefits of partaking in this study other than gaining knowledge in the subject area.

Purpose of the research study:
You are being asked to take part in this research study because you have sickle cell disease, you are between the ages of 18 to 30, you live in the U.S. and you can speak and read English.
Your participation in this research study is expected to be for 7 minutes.

You will be one of 97 people who are expected to take part in this research study.

What you will be asked to do:
Your participation in this research study will include:
1.     A review of this consent form
2.    Response to 3 qualifier questions
3.    A prompt to complete the rest of the survey if you qualify.
The survey contains 5 demography questions, 3 brief questions, and 17 statements to rate from strongly disagree to strongly agree.
a.    Demography questions will include your (age, gender, race, level of education and state of residence)
b.    An example of 1 of 3 questions in the survey is: Do you currently use mHealth technology apps for your sickle cell disease management? YES or NO
·      If you choose yes, please describe how you use mHealth technology apps.
·      If you choose no, please discuss why you do not use mHealth technology apps.
c.     An example of 1of 17 statements that require a rating from strongly agree to strongly disagree is: I would find a sickle cell disease mHealth technology app useful in my everyday life.
4.     There is a total of 25 questions. Once you have completed the 7-minute survey, your participation in this study is complete.
5.     This is the link to the “Sickle Cell Disease Mobile Health Technology App Support for the Transition from Pediatric to Adult Care and Adult Self-management Practices Survey”https://www.surveymonkey.com/r/NPMYSVQ
6.     Please feel free to ask other people who meet the study criteria to take part in this study.