The following are group notes gathered from the World Cafe discussions at the 2019 KAND Family & Scientific Engagement Conference. Visit the conference page to learn more and download the “Research & Clinical Care” session handout with discussion questions here.

2019 KAND Family & Scientific Engagement Conference
World Café: Research & Clinical Care
Group Notes
August 17, 2019

What can researchers and clinicians do to help families improve the daily care and wellbeing of their loved ones now?

Care Guidelines

  • Clinical practice guidelines needed
  • Treatment database: X recommended for Y symptom
  • More support/information for medically complex KAND
  • Guidance for the following challenges:
    • Urinary
    • Cognition/Understanding
    • Speech
    • Physical Ability/Mobility
    • Seizures
      • Analyze seizure medication usage/results by KAND patients to identify any effective medications that could be recommended for other patients to avoid “randomly” prescribing medication

Local Clinicians

  • We need open lines of communication between patients and clinicians
  • Care team should really be a team effort (primary doctors, specialists, therapists, etc. should all be in communication with one another)
  • Doctors should educate themselves about KIF1A instead of relying on parents to explain. Use KIF1A.ORG for information and resources (e.g. KAND Conference presentations)
  • Doctors and genetic counselors delivering diagnosis should recommend KIF1A.ORG as a resource to newly diagnosed families
    • Please don’t send us complicated/worst case scenario scientific literature without explaining the context to us

How can families help researchers keep a patient-centered approach to their work?

  • Connect with Chung Lab (if you have not already) to enroll in the patient registry and natural history study
  • Communicate with researchers about what is important to families
  • Make it personal: help researchers get to know us
  • Help share our appreciation with researchers – families take turns sending thank you cards
  • Emphasize: we want researchers to be collaborative and transparent
  • Create more opportunities (in-person and/or virtual) for researchers/clinicians and families to connect

What questions or concerns do families have about drug/therapy development for KIF1A?

  • How long will it take to get to treatment? To clinical trials?
  • How do we find a treatment to target specifics, since the children vary so much?
  • How do we group or prioritize who gets treatment first?


  • KIF1A.ORG should connect with other researchers and invite them on our quest to cure KAND, help them collaborate with each other
  • Invite more researchers/clinicians to future conferences
  • Establish a prize for researchers: money to best paper/dissertation
    • Stipulations: once a year, research institution only wins once
  • Create a provider list of physicians, therapists and specialists who treat KIF1A patients
  • Better explanation of what “KIF1A” is and what “KAND” is


  • How does the location of the KIF1A mutation relate to clinical presentation?
  • Are there any recommended dietary supplements? Vitamins? Minerals?
  • Is there anything we can do now to slow down the disease progression?
  • Should we bring our kids to be evaluated in the clinic by Dr. Chung? Should we stay with our medical team? Or both?
  • Is it possible to have virtual appointments with doctors/therapists familiar with KIF1A?