ALD & AMN Cross-Sectional Survey: You can help!
Please note: This study is not being conducted by ALD Connect. It is being conducted by Dr. Chad Heatwole from the University of Rochester in conjunction with SwanBio Therapeutics and Autobahn Therapeutics. Questions or should be directed to Anika Varma at 510-556-6513 or email [email protected].
What: The study team is creating a patient-reported measure of health for patients with adrenomyeloneuropathy (AMN) and/or adrenoleukodystrophy (ALD). The study aims to identify the symptoms that have the greatest impact on quality-of-life for individuals with AMN and/or ALD. This will help guide future AMN and ALD research. This online study involves completing demographic questions about yourself and a survey on your AMN and/or ALD symptoms.
What’s involved: Completion of an online survey, which includes demographic questions and AMN/ALD symptom questions. The survey will take approximately 30 minutes to complete, and all responses will be strictly confidential. Your survey will be completely anonymous. You may skip any questions you do not wish to answer.
Who can participate: Individuals ages 18 and older with AMN and/or ALD.
How to participate: Interested participants may take the online survey through the following link: https://redcap.link/AMN_ALD_Study
Note: If you would prefer to complete the survey on paper or over the phone, please contact Anika Varma at 510-556-6513 or email [email protected].