ALSP Genetic Testing Community Survey

Thank you for taking the time to provide Vigil Neuroscience your experience and/or your perspective related to genetic testing for Adult-Onset Leukoencephalopathy with Axonal Spheroids and Pigmented Glia (ALSP).  
This survey is intended for people 18 years of age or older residing in the U.S. who:  
  • Are blood relatives of someone either diagnosed with ALSP or have a confirmed CSF1R mutation OR 
  • Are living with ALSP symptoms and are diagnosed with ALSP (with or without having had genetic testing) OR 
  • Are presymptomatic carriers diagnosed with ALSP by a confirmed CSF1R genetic mutation 
About ALSP
ALSP is a genetic disease, caused by a mutation of the CSF1R gene. A person with a CSF1R genetic mutation has a 50% chance of passing the mutated gene on to their children. People who have a CSF1R genetic mutation but aren’t yet exhibiting symptoms are sometimes referred to as “pre-symptomatic” or “carriers.”  
About this survey and your response
Please know that the goal of this survey is to assess the community’s spectrum of thoughts and feelings around genetic testing for ALSP, and we are eager to hear a diverse set of opinions.  Your individual response is completely voluntary and anonymous - please avoid sharing any personally identifying information (names, locations, etc.).  The anonymous results of this survey will be shared with Vigil Neuro and publicly (i.e., at conferences, in educational materials, publications, etc.) for the purpose of increasing awareness of the needs of the ALSP community. If you have any questions about this survey, please contact

Question Title

* Who in your biological family (blood relative) is/was diagnosed with ALSP (either currently living with symptoms or no longer living) or is a pre-symptomatic CSF1R carrier? Please include all individuals who have a CSF1R genetic mutation regardless of if they are showing symptoms. (Select all that apply)

Question Title

* Are you a resident of the United States?