The Aicardi Goutieres Syndrome Advocacy Association (AGSAA) and Boehringer Ingelheim are proud to announce a new partnership aimed at better understanding the patient perspective of Aicardi-Goutieres Syndrome (AGS) and incorporating patient needs and desires into trial design. This partnership will work towards designing an effective trial with meaningful endpoints and identifying and developing investigators and sites with AGS expertise. By combining their efforts, the partnership seeks to guarantee that clinical trials for AGS are measuring what truly matters and are accurately assessing the effectiveness of potential treatments.
"We are excited to partner with Boehringer Ingelheim to improve clinical trials and patient care for those affected by Aicardi-Goutieres Syndrome," said Devon Cordova, Executive Director of AGSAA. "By working together, we can ensure that patient needs and desires are taken into account during trial design and that we are recruiting for trials that are both effective and meaningful for patients."
To get involved, interested parties can subscribe to our mailing list for updates and join the AGSAA patient registry to help us understand our community’s basic demographics. By working together, we can make a difference in the lives of those affected by Aicardi-Goutieres Syndrome.
For more information, please contact the AGSAA at info@agsaa.org.