1. Informed Consent to be Part of a Research Study

Title of the Project:  Adolescence: A Patient Population With A Need To Be Understood 

Principal Investigator: Veronica Cadavid

University Department:  Masters in Genetic Counseling

Faculty Advisor: Dr. Susan Capasso, MS. EdD LCGC, Bay Path University and Dr. Jennifer Duffy,PhD, Bay Path University

Invitation to be Part of a Research Study

You are invited to participate in a research study. Taking part in this research study is voluntary.

In order to participate, you must: 

Be  18 years old or older 

Received a genetic diagnosis or learned about your genetic condition between early childhood and your teenage years or adolescence (birth to 17 years old)

Interpreting services and assistance to type or enter answers can be used to complete the survey questions.

This survey is only available in English. 

Important Information about the Research Study

Things you should know:

The goals of the study are:  to learn about the following:  

Identify tools and services given to you as a teenager with a genetic condition

Determine whether the tools and services helped add to your understanding of your genetic condition

Determine if the tools and services helped meet your needs as a teenager with a genetic condition 

Share your experiences, so that current tools and services can be better designed for teenagers today

If you choose to participate, you will answer a  survey through a website called SurveyMonkey. This will take about 20 to 30 minutes.

No serious risks should come from answering the survey.

If remembering is painful or uncomfortable, you are able to drop out of the survey and receive counseling services information. 

The experiences and ideas you share in the survey will help make tools and services better for teenagers with genetic conditions, especially genetic counseling.

Taking part in this research project is voluntary.
 
You do not have to participate and you can stop at any time.

Please take time to read all the information and ask questions before answering the survey.

What is the study about and why are we doing it?

Genetic counselors want to understand and learn how we can support teenagers who are learning about their genetic condition. 

We are asking adult participants that were told about their condition as teenagers to tell us more about their experiences as teenagers receiving information about a genetic condition.

Understanding the kind of information given and the ways participants were told about their genetic condition as teenagers will help us improve tools and resources for teenagers today. 

Genetic counselors can also improve the way we inform our teenagers and make sure we support them the best we can physically, mentally, and emotionally. 

Contact Information for the Study Team and Questions about the Research

If you have questions about this study, you may contact:

Veronica Cadavid (student PI) by email at vcadavid@baypath.edu, or by phone at 717-746-8586

faculty advisors: 
Dr. Susan Capasso, MS. EdD LCGC, Bay Path University scapasso@baypath.edu 
Dr. Jennifer Duffy,PhD, Bay Path University jeduffy@baypath.edu
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