Dup15q Alliance is asking our patients and caregivers to help with The Seizure Tracker “It’s not just seizures™” (INJS) initiative a  – centered around a holistic approach to data collection and sharing for families living with seizures.Seizure Tracker is collaborating with advocacy organizations across the epilepsy community to identify and prioritize quality of life (QOL) issues that are important to you. Working closely with researchers at UCSF and people living with seizures (through focus groups) they have developed a survey which categorizes a comprehensive list of QOL items for you to prioritize. The ultimate goal is to create and make public a QOL matrix that can be tailored to the individual patient/family and leveraged within the entire care team.Please consider completing patient/caregiver a survey before it closes on Dec. 15.
- The survey is broken down into 4 sections, each section should take you approximately 15 minutes.
- You can leave and return to the survey at any time (from the same device).
- Individual/family profile information will help Seizure Tracker create a QOL matrix for people with the same diagnosis. The more responses we get, the more accurate/comprehensive the matrix will be.
- Seizure Tracker will use the information to create QOL management tools with a goal of continued monitoring and easing the burden of data collection on patients, families and care providers.
- You don’t have to be a Seizure Tracker diary user to participate. However, Seizure Tracker is FREE for patients and caregivers.
- No individualized identifying data collected through the survey will be shared outside of Seizure Tracker. However, you may include your email address if you want to receive additional information about the initiative. All responses to the survey are anonymous excluding when the respondent shares their email. Emails collected through this survey will not be shared outside of Seizure Tracker.Â
The INJS survey and core outcome set development is financially supported exclusively through Seizure Tracker and UCSF. If we get 30 completed survey responses, our disease will qualify for a core outcome set that could provide valuable insights as to the most challenging side effects of living with our condition and aid in the development of tools to improve quality of life for our patients.  To get started, click here: https://seizuretracker.com/SeizureSuccess/Seizure_Quality_Of_Life_COS
15q Clinical Research Network COVID-19 Vaccine Position Statement
The following statement is offered to the Angelman Syndrome and Dup15q Community from the 15q Clinical Research Network. The CDC has recently posted information regarding the COVID vaccine: https://www.cdc.gov/coronavirus/2019-ncov/vaccines/index.html An FDA Advisory...
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