For Parents/Guardians and Adult Participants
What is this about?
The goal of Lamar Health Research is to make and support research discoveries, primarily in genetic diseases. We are inviting you to join this research study. If you choose to take part, your medical information will be included in research. Our scientists and research partners around the world may study your data and we provide any findings discovered back to you. We may use your data to learn more about genetic diseases and their related conditions. We may also use your data to answer other important research questions. For example, your data could be used to learn more about a common condition, general health, or human history.
When reading this form, please note that the words “you” and “your” refer to the person in the study. They do not refer to a parent/guardian or legally authorized representative who might provide consent on behalf of the person in the study.
What do I have to do?
As part of Lamar Health Research, we may contact you about other research studies you may be eligible for.
Optional activities are optional. You can take part in Lamar Health Research whether or not you do them. We will contact you if there is an optional activity you can take part in. At that time, we will give you more information about the sample we want to collect, what you have to do to provide it, and how it may be used.
Are there risks to me in this research?
The main risk of participating in Lamar Health Research is to your privacy. While it is our priority to keep your information safe, a data breach could occur if someone sees or uses your data without your permission. Even without your name, there is the chance that someone could figure out who you are. They could misuse your data. We believe the chance of this is very small, but it is not zero. Providing an optional blood sample could cause you some physical discomfort. It is not very likely, but collecting blood could cause you to faint, or cause a bruise or infection at the needle site.
How will you protect me?
Lamar Health will remove personal information that could identify you (such as your name or contact details) from your data before we use it in research. We have strong protections in place to make sure your data are securely stored and carefully handled. We also require all of our research partners to take reasonable precautions with your information. Unfortunately, as with any online platform, it is not possible to give you a 100% guarantee that your data will be safe.
Will I benefit from doing this?
We will provide you with insight reports related to your condition gathered from your data and other patients that are also participating. Researchers may use your data to learn more about your condition. Some of these researchers may try to develop treatments or tests for your condition. The more data they have, the more likely they may discover something that could help patients like you. Since your data will be used in a variety of studies, your participation may help people with other conditions.
Do I have to be in the research study?
Taking part in Lamar Health Research is entirely your choice. If you do not want to be in the study, select “Reject” at the end of this document. Regardless of what you decide, you will continue to have access to your Lamar Health account and be able to use Lamar Health’ services.