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What is a research study?
A research study is a systematic investigation into a question of interest. The main purpose of research studies is to gain knowledge. This knowledge may be used to help others. Research studies are not intended to directly benefit those who participate, though some might.
What is involved in being in a study?

Every study is different in terms of what it involves. For example, some studies may involve a minimal effort and commitment, such as completing a survey at home. Other studies may require more effort and commitment, such a traveling to a location to complete study activities.

 

Each study has dedicated staff members to talk with you about the study so that you can make a decision about whether you would like to participate.

Do I have to be in a study?

No, being in a research study is entirely your choice.  If you decide to join a study, you can change your mind later and withdraw from the research study without penalty.

 

Taking part in a medical research study is separate from medical care. The decision to join or not join the research study will not affect your status as a patient.

What is a "consent form"?

A consent form describes everything you need to know to decide about whether to participate the research study. Study staff may review the consent form with you and answer questions you have about the study.

Signing a consent form means that you understand what is involved in the study and you agree to participate. You may always change your mind about being in a research study – even after you have signed a consent form.

How do I sign up for a study?

Contact the study staff to let them know you are interested. You may use the button at the top of the screen or click to request information.

 

You will be given documents that describe the study risks, procedures, and any costs to you. These documents will also describe how your health information will be used and by whom. Review these documents and ask questions of the study staff.

In addition to answering your questions, the study staff may ask you some questions to make sure that the study is a good fit for you and your child.

It is important that you read all documents provided, ask questions of the study staff, and take time to carefully consider whether the study is right for you.

If the study is right for you, let the study staff know. They will work with you to find a good time to visit our center, make or assist with travel arrangements, and help you to prepare for the visit.

Opportunities to Participate in Research Studies

Study Title: Modeling the human neuronal phenotype of 3q29 deletion syndrome

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Why is this study being done?
To learn more about 3q29 deletions and the processes that give rise to these disorders.

Who can be part of this study?
Children and young adults ages 6 years and older with a diagnosis of 3q29 deletion syndrome and their family members.

What are the goals of this study?
To understand the characteristics associated with 3q29 deletion.

What is involved in participating?
You and your child will travel to the Marcus Autism Center in Atlanta, Georgia for behavioral testing. The testing will take place over 2 days.  During the visit:

  • Your child will complete games and activities related to language and thought, and answer questions about what s/he thinks and feels.
  • Your child will participate in a medical exam.
  • We will draw 4 vials (about 3 tablespoons) of blood from you and your child from a vein in the arm.
  • We will ask you questions about your child including, his or her development and behavior.
  • We may use magnetic resonance imaging (MRI) to measure the parts of the brain that are active when your child is processing information.

To help us to prepare for your visit:

  • We will ask you to complete some questionnaire forms before you arrive. These forms may ask questions about your child and his or her development and behavior.
  • If you are a patient at Emory University Hospital, any Emory Clinic, or Children’s Healthcare of Atlanta, we will ask for permission to access your medical records. If you are not a patient at one of these sites, we may ask you to sign a medical record release form to access your medical records.

What are the benefits?
You will have the opportunity to discuss findings of your child’s behavioral testing with our clinician. You will receive summary copies of assessment results. The project staff will offer support and recommendations when appropriate.

What will I receive for participating?
Each participating family member will receive $150 for time and effort to travel to Atlanta. We will also cover the costs of transportation, lodging, and meals during your stay.

I am interested in learning more. What do I do?

The Emory 3q29 Project ♦ Department of Human Genetics ♦ Emory University School of Medicine

615 Michael St, Suite 301 ♦ Atlanta, GA 30322 ♦ 404.727.3446 ♦ 3q29project@emory.edu