The APS Type 1 Foundation is reaching out to the APS Type 1 (APECED) patient community to raise awareness about an opportunity for patients to help advance research from home.
What is the goal of the research?
The goal of this study is to understand how APS Type 1 (APECED) works on a cellular level which is an important role in the discovery of new therapies. This research can only be conducted with the participation of patients like you. This study is IRB-approved; your privacy and information will be kept confidential and protected.
Who is conducting the research?
Sanguine BioSciences, Inc., in collaboration with Regeneron Pharmaceuticals, is conducting this research study. The study has been approved by an institutional review board (IRB), and your personal health information will be protected. The APS Type 1 Foundation will not have access to any information from the study. Sanguine BioSciences has agreed to provide a charitable contribution to the APS Type 1 Foundation for its efforts to help recruit study participants.
Who can participate?
You may qualify to participate if you:
· Are 18 years of age or older
· Live in the U.S.
· Have been diagnosed with Autoimmune Polyendocrinopathy-Candidiasis-Ectodermal Dystrophy or APS Type 1 (APECED)
What would I have to do to participate?
Patients who qualify can support research by providing a one-time blood donation from home. The blood sample will be collected by a mobile medical professional staffed by Sanguine Biosciences at a time that is mutually convenient and compensation of a $100 gift card will be provided.
The goal is to collect samples from patients with APS Type 1 (APECED) for new research to be conducted. Access to these samples will allow researchers to enhance our understanding of APS Type 1 (APECED) in support of developing new diagnostic and treatment options for patients living with the condition.
What precautions are being taken with regard to COVID-19?
With the concern regarding the spread of COVID-19, all mobile medical professionals will be provided personal protective equipment (PPE) including gowns, face masks, gloves, hand sanitizer, and alcohol wipes in order to protect our participants and staff against the spread of the virus.
To learn more or sign up, visit https://patients.sanguinebio.com/apeced-study/