Your are the unaffected sibling (sister or brother) of a child with any problem of NL.

Research Registry for Neonatal Lupus (RRNL)

As the unaffected sibling of a child who has been diagnosed with a manifestation of Neonatal Lupus (NL), we appreciate that you have expressed interest in participating in our research.  It is our pleasure to invite you to enroll in the National Research Registry solely devoted to neonatal lupus.  As you may already know, this registry is supported by funds from the federal government and represents a major step toward finding answers to this rare disease.  The aims of this special registry are to collect data on as many patients as possible and to foster collaborative efforts with researchers across the country.  The long-range goal is to find ways to prevent and treat this unusual condition that affects children.

We are collecting medical information as well as blood or saliva for isolation of DNA from additional family members.  In some instances we may test your blood for SSA/Ro and SSB/La antibodies. (See Section B. Subject Participation of the Consent Form beginning on page1.)  It is our intention to accumulate preliminary genetic data during the currently funded period.  Your data and specimens will increase the amount of information available for our research and for investigators with approved research protocols to use the coded clinical data and specimens of the RRNL in their research.

If you wish to participate in this research project you can either contact us directly by clicking here and a Consent Form will be mailed to you, or by downloading the form below, completing and mailing it to us click here for mailing address.  (Please NOTE: A  parent must consent to enroll minor children (newborn to age 17) and  complete a special page of the consent form.

• Read and sign the Informed Consent Form to Participate and Authorization for Research (consent form).  (Note: Please also initial and date each page of the form)

Upon receipt of your completed forms we will mail you either a blood or saliva collection kit.  Please specify the specimen you prefer to donate.

• Consent Form

If you have any questions, please do not hesitate to send us an email zoey.smith@nyumc.org or call at 212-263-2255.

Thank you for taking the time to make this project a continuing success.