FAQs
What do I do if I have questions or want more information?
If you have questions about the study, you may call The Center for Applied Genomics Hotline at 1-866-912-CHOP (2467) or e-mail Rosetta Chiavacci at This email address is being protected from spambots. You need JavaScript enabled to view it. . You may also talk to your own doctor if you have questions or concerns.
Can my child be taken out of the study if I change my mind?
Yes. Even if you agree to let your child take part in the study, you can change your mind at any time. Your child’s current and future medical care will not be affected if you decide not to take part.
Will there be any costs to me?
There are no additional costs to you or your insurance.
What about privacy and confidentiality?
We need to collect health information about you in order to conduct this study. We will do our best to keep your personal information private and confidential. However, we cannot guarantee absolute confidentiality. Your personal information may be disclosed if required by law.
Do I need to give my consent in order to participate?
Once you understand the study, you will be asked to decide if you wish to participate. If you wish to participate in this study, you must sign a form. A signed copy will be given to you to keep as a record. Even if you agree to participate, you can change your mind at any time. Your current and future medical care at CHOP will not be affected if you decide to withdraw from the study.
What happens if I decide not to take part?
Participation in this study is voluntary; you do not have to take part in order to receive care at CHOP. Your current and future medical care at CHOP will not be affected if you decide not to participate.
Are there any benefits to taking part?
Although there will be no benefits to you from this study, we hope that the knowledge gained from this study may help us better understand the causes of childhood diseases and conditions. It may allow us to develop better ways to diagnose diseases and to develop new and better medicines to treat diseases in the future.
Are there any risks involved?
Taking part in any research study involves risks or side-effects and inconveniences. You can talk to your study doctor or your regular doctor about these risks:
What will CHOP do with my DNA?
Your DNA will be given a unique code that will include no information that can identify you. It will be stored in a secure place in a laboratory in CHOP's Abramson Research Center.
How long does the study last?
Taking part in the study requires 15 to 30 minutes. With your permission, the researchers will get updated information from your child’s medical records once a year. Will my child be asked to come back for more tests?
After giving a blood sample, there are no more study-related activities and no one will contact you or your family for more information unless you give a permission to do so by checking a special box on the informed consent form.
What would I need to do?
You would need to let study staff collect a one teaspoon-sized blood sample from your child. Whenever possible, this sample will be taken at the same time as a scheduled blood test for routine purposes — so it will not require another needle stick. Parents who decide to take part would need to let study staff collect one blood sample from them as well. You would also need to answer a few questions and sign a written consent form. When you sign the consent form you are giving the study staff permission to access your child’s medical records and store them in a way that does not include any personal information.
Who can take part in the study?
Children who are treated at the Children's Hospital Healthcare Network and their parents may be eligible to take part. We will also approach patients who attend the various specialty clinics at CHOP and/or the satellite clinics and recruit subjects in their homes during a visit by a member of the research study team. We are also recruiting at community outreach programs sponsored by CHOP affiliated physicians. Children need the permission of their parents to take part in the study.
What is involved in giving a DNA sample?
Human DNA is organized in pieces called genes that provide the instructions needed to make our bodies work. There are over 10 million known ways that human DNA can vary from one person to another. Through this study, we hope to learn about the genetic causes of common disorders and how people vary in terms of their genes.
What is the purpose of the study?
The Center aims to collect blood samples from more than 100,000 children. The children who take part in the study are joining an effort to better understand the causes of complex pediatric disorders. By comparing children who have medical conditions with those who don’t, the Center may be able to determine which genes are responsible for these conditions and begin working on new treatment approaches. The Center will also search for genes that determine which drugs are most likely to work for an individual patient in order optimize the benefits and minimize any side effects from the drugs.
