You are the sibling (sister or brother) of a woman who has a child/children with any problem of NL. You are the maternal grandmother of a child/children with any problem of NL. You are the maternal grandfather of a child/children with any problem of NL.

Research Registry for Neonatal Lupus (RRNL)

As a relative of a child who has been diagnosed with neonatal lupus, 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 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 maternal family members as part of our pending competitive renewal. 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 page 2. 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 protocols to use the coded clinical data and specimens of the RRNL in their research. 

If you wish to participate in this research you can either contact us directly by clicking here  and an enrollment package will be mailed to you, or by downloading the forms listed below, completing and mailing them to us clicking here for mailing address.  

1. 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)
   
   
2. Fill out the enclosed enrollment questionnaire.
   
   
3. Sign the request for release of medical records forms. We may  communicate with your doctors directly for medical records.  We will only ask for those medical records that will verify information supplied in your enrollment questionnaire. We will then send a signed release form to each doctor identifying the specific records we are interested in obtaining.

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

1. 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.