Go to www.dup15qregistry.org. Read the participation tab and if you agree, you are ready to create a username and password. There is no cost to enrolling in the registry. An email will be sent to the administrator who will approve your admission to the registry. You must be registered with Dup15q Alliance to gain admission.
Once you have gained access, you can start the survey. The first section is Diagnosis. You will need to upload a copy of the affected individual’s genetic report. Instructions are provided regarding how to upload your report. You may have two methods to submit this report. You can send the report via email, fax or mail. If you participated in the Seizure Survey with Elwyn you can agree to have Elwyn release the report to the administrator and it will be uploaded to your record. You will then proceed to answer the questions section by section.
It is important that you answer as accurately as possible. If you do not know the answer, skip it - do not guess - and go back to the question later. You can stop and save anytime during the process so it is not necessary to answer the entire survey in one sitting, although it is preferred.
If you forget an answer a question or forget to upload a report you will get a automatic reminder from the administrator.
There is a glossary for you to use if there are certain terms that you are not familiar with.
Other medical reports that will need to be uploaded include a MRI, Sleep Study, EEG, EKG/ECG and Echocardiogram.
If you did not complete the survey, logging back on at a later time, you will start where you left off. You will need to go through the entire survey in order to go back to the beginning of the questionnaire. It is also important to note that you will not have access to compare your answers to others until you have completed the survey.
If at any point you have questions there is a help link or you can email the coordinator. We have a coordinator who is verifying all of the genetic reports as well as verifying the answers to your questionnaire for accuracy. Therefore, if there is some confusion you may get an email from the coordinator for clarification.
Creating this medical registry has been an extensive project for Dup15q Alliance. It would not be a reality without the fundraising and volunteer efforts of families and friends of Dup15q Alliance. Thank you for participating in the Dup15q Alliance International Registry. You are helping to build a brighter future for those affected by chromosome 15q11.2-13.1 duplication syndrome.