2015 Uppergate Drive
Atlanta, GA 30322
Researchers at Emory University are seeking children with rheumatoid factor positive
juvenile idiopathic arthritis.
Who is eligible:
Children with a diagnosis of JIA
One or more tests for Rheumatoid factor are positive
Onset of arthritis was before or at the age of 16
Diagnosis of JIA was made or confirmed by a Pediatric Rheumatologist
How to participate:
If interested, please contact the JASS research team
Alternatively, with your permission, we will contact you. (Please have your doctor fax the attached referral form to us)
There is no obligation to participate
We will determine eligibility and explain the study
Participants will sign a consent form, complete a questionnaire, and provide a small amount of blood
No travel to Emory is necessary
JASS FREQUENTLY ASKED QUESTIONS (FAQs)
What is the Juvenile Arthritis Susceptibility Study (JASS)?
The Juvenile Arthritis Susceptibility Study is a research study taking place at Emory University. We are researching the genes (material inherited from your parents) that may play a role in the development of a specific type of juvenile arthritis, namely Childhood Onset Rheumatoid Arthritis or Rheumatoid Factor positive juvenile arthritis.
What is Childhood Onset Rheumatoid Arthritis (CORA)?
The terms juvenile idiopathic arthritis (JIA) and juvenile rheumatoid arthritis (JRA) refer to a group of chronic arthritic conditions in childhood. One of the types of juvenile arthritis resembles Rheumatoid Arthritis in adults. We use the term Childhood Onset Rheumatoid Arthritis, or CORA, to describe this type of Juvenile Arthritis (JIA) that resembles Rheumatoid Arthritis in adults. Individuals with a diagnosis of JIA, (with arthritis symptoms starting before the age of 16) that have had one or more tests for Rheumatoid Factor (RF) or anti-cyclic citrullinated peptides (CCP) that are positive, may be eligible to participate in the research study.
What does participation in JASS involve? Participation in the study involves:
A signed consent form stating that you/your child would like to be a part of the study
Completion of a questionnaire about you/your child’s background & family history
A signed Medical Record Release form (so that we may get a copy of your diagnosis information, etc. from your doctor)
Collection of a blood sample for the study (pre-paid shipping material provided)
What happens to my blood sample?
By using the blood sample collected for the research, we hope to identify which genes play a role in the development of rheumatoid arthritis in children. We will also study if there are differences in genetic factors that predisposing to Rheumatoid Arthritis in childhood compared to rheumatoid arthritis in adulthood.
How will my privacy be protected?
All information provided for the research study will be kept confidential. Personal identifiers like your name and your date of birth will not be released. The blood samples collected will be coded only with a research study number, so as not to identify you. More information regarding how your privacy will be protected is included in the ‘Informed Consent’ form that we will send you prior to your participation in the study.
Do I need to come to Emory University to participate?
No, once you have had a chance to review the consent form we send you and information about the study, we will answer all your questions by telephone. At that time you can sign the consent form that we send to you and fill out the questionnaire. The participants will also have to donate a blood sample for the purpose of the study. We will need you to sign a medical record release form so that, as part of the study, we can get medical records from your doctor’s office or hospital about the JIA diagnosis, lab values, x-rays, etc.
Is there a cost to participate in the study?
No, there is no cost to participate in the study or for any of the procedures that take place at Emory University. Study procedures and lab test performed at Emory that are part of the study will not be charged to you or your insurance company. However, you may have to pay for the cost of the blood draw upfront if it done at an independent lab. If you are charged a fee, we will reimburse you when you provide a receipt. In some cases, we may be able to arrange for payment for the blood draw prior to your visit at an independent lab.
Does this study involve treatment?
No, this study only involves the collection of a blood sample and information about your arthritis.
Why did you pick a zebra as the mascot for JASS?
In medical education, there is a saying that goes “When you hear hoof beats, think horses – not zebras”. This means that, although medical students will learn of a great many odd diseases, some of them are quite exotic (“zebras”), but that most patients’ complaints will result from common causes (“horses”). In other words, we are trained to look for common conditions for patients with unusual or obscure problems. However, in our case, we are truly looking for the rare instances of children who have the adult form of Rheumatoid Arthritis. We estimate only about 1 in 20,000 children under 16 have Childhood Onset Rheumatoid Arthritis. Hence, a zebra seemed like a nice mascot for our study.