Who can participate in the study?
Any individual with keloids is eligible to participate. Sometimes it may not be clear whether a scar is a keloid. In such instances we will clarify with the individual whether a scar is a keloid by discussing the scar history or by asking for a photograph.
If keloids run in the family we would also be interested in recruiting certain other affected and unaffected family members as controls.
What if I do not live close to UConn Health?
We can communicate with you by email and telephone. You do not have to come to UConn Health. However, if you live close by you are welcome to see us in person.
What do I need to do if I wish to participate?
You will be asked to donate a onetime saliva sample. If you have keloid surgery we would also like to obtain keloid tissue that would otherwise be discarded by the surgeon.
What are the procedures for participation?
To donate saliva:
- You contact us by email or by phone at 866-512-9897 (toll free) or 860-679-2062.
- We will establish whether you have keloids or not and answer your questions about the study.
- We will send you a saliva collection kit, a questionnaire regarding your keloids and consent forms as well as a prepaid return envelope.
- We will make an appointment to talk you through the consent form and the questionnaire. We will answer any question you may have.
- You return the signed papers and the saliva sample by prepaid FedEx envelope.
- You also send us photos of the keloids (by email or hard copies).
To donate tissue:
- You will have gone through the recruitment procedures for the saliva collection.
- Please let us know about any upcoming keloid surgery and tell your doctor that you participate in a keloid study.
- We will arrange with your doctor to receive keloid tissue that he would otherwise discard. No extra tissue will be removed. We will send special tubes to the doctor who will send it back via a prepaid FedEx envelope.
- We may ask you to give us a tube of blood at the same time you have the surgery.
Why do we need these samples?
The saliva samples will be used to isolate DNA from the cells in the saliva. DNA is the material that makes up genes and chromosomes. We will compare the DNA from individuals with keloids and individuals without keloids. Thus we hope to find the genetic differences that lead to keloid formation.
Tissue samples from keloids will be used to isolate scar cells and to study the differences to normal scars.
Confidentiality and privacy?
We do our best to protect your personal data. All samples will be given a number and kept separate from the paperwork which links the number to your personal data. We will not pass any information on to your insurance. We will not enter our research data into any of your medical records.
Can I withdraw from the study?
If you choose to withdraw from the study after your sample has been obtained, we will destroy all records in our research files connecting your identity with your samples. This way samples can only be used anonymously from this point forward.
Can I obtain results from this study?
You can choose to receive general information about results once we have made significant progress. No research results pertaining to your person will be shared with any member of your family. We recommend reviewing the information about your own sample with your physician or genetic counselor who can explain the significance of the finding. This is to avoid any confusion about genetic information.
What if I have questions?
You can contact the study team at any time and we will give you contact information for regulatory entities that oversee our research.