Genetic ALS & FTD Community Attitudes Towards Clinical Monitoring Prior To Disease |
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.
If you are unfamiliar with ALS see here , if you are unfamiliar with FTD see here. In some parts of the world MND is used in place of ALS. We will use ALS in this survey.
Medical Monitoring vs. Research Monitoring
Medical monitoring is provided by a clinician to ensure that your care is tailored to your individual health needs. This differs from research monitoring, where a researcher follows a specific study protocol and, as often stated in informed consent documents, is not responsible for your personal medical care. Many individuals undergo preventative monitoring for conditions such as cancer, diabetes, and heart disease. This approach can be applied to the possible development of ALS or FTD for individuals at elevated genetic risk.
Medical care also involves different logistical factors than research monitoring, such as costs which may be covered by private insurance or public healthcare systems. Additionally, records of medical care can document that one is at risk for genetic ALS or FTD which may have important privacy implications such as in the United States the ability to be discriminated against in some forms of insurance coverage.
Survey Purpose and Details
This survey aims to gather community perspectives on medical monitoring for the development of genetic ALS and FTD. It is anonymous, and we do not collect any personal information beyond your survey responses.
Please complete the survey only once.
It will take approximately 15 minutes to finish.
The survey is only for individuals aged 18 and older. If you are younger than 18 do not fill out this survey.
Survey Risks
Reflecting on the topics covered in this survey may be distressing. Participation is entirely voluntary—you may start, stop, or choose not to complete it at any time. Your responses will only be recorded when you submit the survey.