The purpose of ALSsurvey.org
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Collect data for ALS research
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The data will be used to learn more about sexuality in ALS to improve the quality of life for people with ALS and their romantic partner
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The information you and your romantic partner provide will be used to evaluate sexual behavior, disease progress, and to help foster ALS research
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Through the internet we hope to reach more people with ALS and their romantic partner in different regions
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Who is eligible?
ALS participant
To be eligible you must:
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have a diagnosis of probable or definite ALS by a doctor,
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have seen two or more doctors regarding your symptoms of
ALS,
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have been diagnosed with ALS by one or more doctors,
· have been diagnosed by a doctor who works at a MDA/ALS certified
center, ALS Association certified center, clinic, or university,
and
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be between 18 to 80 years of age.
Romantic partner of a person diagnosed with ALS
To be eligible you must:
· be between 18 to 80 years of age,
· have been in a relationship with a person who has ALS before he or she
had any symptoms of weakness,
· have been in a relationship with a person who has ALS before he or she
was diagnosed, and
· provide one or more hours of care or help for your partner per week.
Please click here,
if you have been diagnosed with amyotrophic lateral
sclerosis (ALS, sometimes referred to as Lou Gehrig’s
Disease).
Please click here,
if you are the romantic partner/caregiver
of someone with amyotrophic lateral sclerosis (ALS,
sometimes referred to as Lou Gehrig’s Disease).
We welcome your feedback and concerns about our project. Carisa Bielecki and Ryan Howell, PhD, at San Francisco State University have developed this survey. If there you would like more information, please let us know at Bielecki@sfsu.edu.
