Genetic ALS & FTD Community Attitudes Towards Clinical Monitoring Prior To Disease
Your Voice Matters
The concept that being at genetic risk for ALS and or FTD is a part of an impacted person's personal medical status is gaining acceptance. As this is becoming more widely acknowledged, the associated concept of monitoring for the onset of ALS or FTD via one's own medical care has become introduced. As these ideas continue to develop, the community of people impacted should have input into our desires and feelings about these concepts.
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To that end, a committee of advocates within Genetic ALS & FTD: End the Legacy spent many months developing this survey. Taking input from over 40 experts in the field the survey was refined to it's present state. An institutional review board approved that the survey was able to be ethically done by us.
Survey
Launches
Thursday March 19th
Link will Appear on that date
Families where successive generations have been diagnosed with Amyotrophic Lateral Sclerosis (ALS) or forms of dementia have been recognized for generations. While there have been advancements in treatment and care, there was no formal medical advice for individuals at risk of genetic ALS or Frontotemporal Dementia (FTD) until 2024.
The year prior, a meeting resulted in the first clinical guidance for those at risk. The guidance included a key recommendation: individuals in the presymptomatic or at-risk stage should receive medical monitoring if they desire it.
You can read the full guidance document here.
The current guidelines do not specify when monitoring should begin or how often it should occur. These details may be refined in future meetings.
This survey aims to gather community feedback on the new care guidelines and provide an understanding of the impacted community’s perspectives on medical monitoring.