A joint project between:
WE NEED ANSWERS
WORKING TOGETHER WE CAN FIND THEM
Families working with researchers, clinicians, and pharmaceutical companies to accelerate new treatments for our children.
Serving you by:
- CONNECTING with a network of SCN8A families in your region and our own in-house geneticist/scientist/parent – Michael Hammer.
- SUPPORTING participation in the SCN8A Registry to increase scientific understanding of SCN8A.
- PARTNERING with SCN8A Clinicians to develop Standards of Care for our children and improve their quality of life.
- COLLABORATING with SCN8A Researchers and Drug Developers through a new SCN8A Global Research Consortium.
Families Can Advance Research and Possible Cures by completing the Registry!
Benefits of your participation in this Community SCN8A Registry:
- PROMOTE early diagnosis.
- UNDERSTAND disease progression.
- CONTRAST your child’s condition to others with the same or similar variants.
- CAPTURE the factors related to the wide variability among our children.
- CHARACTERIZE critical outcomes of treatments and interventions.
- FACILITATE research and development of disease-altering treatments for our children.
- PUBLISHING RESULTS* from the Registry to help better inform families, treating clinicians, researchers, and drug companies.
OUR PROMISE: YOUR DATA IS SAFE AND BEING USED TO FIND ANSWERS
Your privacy will always be respected.
Your data is shared only on a de-identified basis (cannot be linked back to you) with clinicians, researchers and drug developers.
You will receive frequent reports on emerging findings from the survey data.
Your data will be aggregated and integrated with other broader databases to help better understand rare pediatric epilepsies and learn from one another.
Progress of 2020 Registry Drive
Our Goal for 2020 drive 200 Submissions 117 Completed
76 started but need to be completed.
REMAINDER TO MEET GOAL:
83 completed submissions
Spotlight on 8A Data
NEW SCN8A REGIONAL FAMILY NETWORKS
The FAST partnership is supporting the development of a network of independent SCN8A Regional Family Networks. Participants share a commitment to working together to advance SCN8A treatments and helping to maximize participation in our SCN8A registry.
Dr. Hammer is an ongoing resource to families in the network to help expand understanding of each child’s specific mutation, what’s known about the mutation, and important unanswered questions the registry is beginning to address.
Each Regional Forum can independently determine their own priorities and program activities. Our partnership will support regional meet ups to help SCN8A families come together within their region. These will be virtual in near term although we envision support of in person regional meetings post COVID-19.
Current Operational Regional Networks
So far, we have started regional networks for these areas:
- Lower Midwest
- Central Mideast
- Spanish-speaking group
Start a New regional network
Want to start a new regional network? We can help get you set up and provide an overview of the process, training on privacy measures and assistance with getting started.
If you’re interested, contact us at firstname.lastname@example.org.