20/01/2022 The study is now closed upon receiving sufficient responses to the survey and the research will be moving to the next phase. Thank you to everyone who got involved and completed the survey.
Dr. Chad Heatwole from the University of Rochester in conjunction with SwanBio Therapeutics and Autobahn Therapeutics are conducting a study to identify the symptoms that have the greatest impact on quality-of-life for individuals with AMN and/or ALD.
What: We are creating a patient-reported measure of health for patients with adrenomyeloneuropathy (AMN) and/or adrenoleukodystrophy (ALD). This study is being conducted by Dr. Chad Heatwole from the University of Rochester in conjunction with SwanBio Therapeutics and Autobahn Therapeutics. 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.
Purpose: To produce a tool that will help gather data and advance therapeutic development in ALD and AMN.
What’s involved: Completion of an online survey, which includes demographic questions and AMN/ALD symptom questions. The survey will take approximately 15-20 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. The questions should be relatively easy to understand and answer.
Who can participate: Individuals ages 18 and older with AMN and/or ALD*
*The demographic form has questions to determine exact diagnoses; ALD, AMN, Carrier of ALD, with Addison’s Disease
Questions? Comments? Any questions or comments can be directed to Anika Varma at 510-556-6513 or email firstname.lastname@example.org.