Be A Part of Helping Those with SCN8A Get the Best Care Possible
The International SCN8A Alliance is seeking self-nominations for family representative for the SCN8A Clinical Guidelines Core Panel
The International SCN8A Alliance, in collaboration with our SCN8A Clinicians Network, will soon be formally launching the project to develop the first consensus Diagnosis and Treatment Guidelines for SCN8A. The project will be overseen and directed by a Core Panel and will be co-chaired by Dr. Scott Perry as well as SCN8A mother and 8AAlliance co-founder, Gabi Conecker.
The Panel will work together over the coming year to develop and administer a structured Modified Delphi process, a rigorous approach well defined in the literature. The Core Panel will include approximately 12 leading SCN8A clinicians from around the globe as well as 6 family representatives.
Clinicians on the core panel will focus on weighing the scientific evidence for possible guidelines. SCN8A families will play an important role in providing a solid grounding in actual experience, priorities, and perspectives of families throughout the process.
This serves as an open invitation for caregivers to express their interest in participating in the Core Panel to oversee this vital effort.
As you would likely anticipate, this is not a simple undertaking but will require multiple meetings and active engagement of each Core Group member over a number of months. To assist in giving you more detail on what the process and level of effort might involve, below, we have included answers to a few key questions you might have about the role, possible timing, and approximate level of effort that may be involved in serving on the Core Panel for this seminal effort. But, in short, each core group member will be responsible for participating in a literature review in a specific area, for providing input on creation of questionnaires and for synthesizing results.
As with clinician members, family nominees are vetted relative to established criteria. The criteria for selecting family participants in the core panel include:
- Diversity of personal experience (e.g. severity of impact, GOF/LOF, age of child, access to specialist center, state of seizure control)
- Mix of backgrounds (e.g. full time caregiver, science/medical background, other skills or experience)
- Broad global and geographic diversity
- Anticipated ability to commit to time requirements (see further discussion of roles and time commitments below)
- A history of collaboration and problem solving
We invite any SCN8A parent interested to notify us by email and include a brief discussion of how your background aligns with the criteria for selecting Family Representatives along with your resume/CV, no later than Monday November 1st.
Please submit to info@SCN8AAlliance.org.
Write to Gabi at firstname.lastname@example.org if you have any questions or would just like to learn more about how the Core Panel will function.
After applications are reviewed by the selection panel, chaired by Dr. Elaine Wirrell, we will notify all those who expressed interest about the final selections.
Thank you in advance for considering participation in this urgently needed undertaking to improve care and outcomes for all our loved ones struggling with SCN8A.