Calling all AE survivors and caregivers for long-term outcome study!
May 31, 2018
We would like to invite all AE patients and their caregivers to make a difference in research on the disease. Please click on the correct link below and join us in moving the research forward. The AE Alliance is honored to be participating in a study authored by Dr. Anusha Yekoshumar at The Icahn School of Medicine at Mount Sinai and reviewed by our Medical Advisory Committee. This study involves a 20-minute survey about the long-term effects patients may be experiencing. There is also a survey for caregivers to offer feedback . The goal is to learn more about the challenges that AE survivors face after diagnosis and treatment. At the Alliance we hear from many of you who are facing ongoing struggles to return to life as “normal” and caregivers desiring to help their loved ones. We hope this opportunity is one you will be glad to support so that these areas can be addressed.
Patients: https://redcap.mountsinai.org/redcap/surveys/?s=MYW4X94YKY
Caregivers: https://redcap.mountsinai.org/redcap/surveys/?s=FEL7WCADND
Thank you in advance for your support.
Many thanks to Dr. Anusha Yekoshumar for conducting this important research.
