Community Survey:
Genetic ALS & FTD Community Attitudes Towards Clinical Monitoring Prior To Diagnosis
With the publication of the paper on Guidance for the Clinical Management of those at risk for genetic ALS or FTD in recent years, our community group Genetic ALS & FTD : End the Legacy desired to survey people impacted by inherited ALS or FTD about the concepts included in that paper as well as medical monitoring for the risk of these diseases generally.
Survey 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 survey responses. The survey should be completed only once per person. It will take about 15 minutes to complete. The survey is only for those age 18 or older who are at risk for inherited or genetic ALS or FTD.
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.
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