In order to support research of brain development and activity in as many dup15q syndrome patients as possible the Dup15q Alliance has created an electroencephalogram (EEG) and magnetic resonance imaging (MRI) storage system that families can directly upload their/their child’s EEG and/or MRI files for use in dup15q syndrome research. In order to allow as many people with dup15q syndrome to contribute we are putting the power in the patients hands to upload the data, not your doctor or facility.
We are interested in the full EEG files, all of the “squiggly lines” rather than just the summary (but you can upload both). In order to look at all aspects of brain activity in dup15q syndrome, we are looking for ALL EEGs not just those from patients having seizures and not just one time point. The more EEG files we have the more questions we hope to answer about brain function and development in dup15q syndrome. Some of your questions we are looking at are brain activity in sleep and when going to sleep, seizures (can we figure out who will develop seizures), are there more common brain activity signatures in dup15q that are related
to behavior, etc.
The process starts with you requesting the EEG or MRI files from your medical provider. We have sample letters/emails you can use to ask your doctor/medical facility. The cost for this will be covered by the Dup15q Alliance. Please submit any receipts for costs associated to admin@dup15q.org. If your preference is to have your disk shipped yourself or directly to the Dup15q Alliance office please send it to Dup15q Alliance c/o Vanessa Vogel-Farley 12042
Cedar Creek Rd, Cedarburg, WI 53012.
After you have a copy of your file, you will be able to upload it directly to the LADDER database directly via the link that will be emailed to you. Then you navigate to the place the files are, it might be to the disk that you inserted or a file on your computer. If you have any trouble you can call the Dup15q Alliance office to help you troubleshoot. If you are not comfortable with technology but would like to participate you can also have your disk sent to the office for upload. After the upload is complete, the disk will be sent back to you for your usage.
After you have completed the upload you will always have access to that file for whatever use you need and at any time you can request to have it removed from the storage system. To use the files for research, the files are “cleaned” meaning any identifying information is removed and they are labeled with you/your child’s unique research number. No one has access to your personal information except for the Dup15q Alliance Research Staff.
Here is a sample letter/email to send to your doctors office to obtain copies of research.
“Dear Dr. ,
My child is a patient of yours and as you know we are part of a large dup15q community dedicated to understanding characteristics of dup15q syndrome. In order to help understand the syndrome better, the Dup15q Alliance (patient advocacy group) is supporting a research study that can put our son/daughter’s EEG to be compared with other kids with the syndrome. Additionally, this research study also investigates overnight sleep EEGs in Dup15q children, to better inform sleep disturbances. In order for us to participate in this study, we need a copy of our child’s EEG recording. This can be a few minutes of clinical EEG recording and/or overnight sleep EEG recording, whichever was collected at your clinic during our visit. Along with EEG, any other relevant medical information collected during the visit would be great to have. It will be great if you could let us know of any paperwork involved to get this process started. We are very eager to participate in this research study and very much appreciate your help in sending us the recordings and medical information collected during our visit.
Thank you!”
Upload your EEG/MRI to the LADDER Database. Don’t have an account with LADDER? Register Here
