Rare-X Data Collection for ADOA Patients | Setting Up a Rare-X Patient Profile скачать в хорошем качестве

Rare-X Data Collection for ADOA Patients | Setting Up a Rare-X Patient Profile

Join us for an important webinar from the ADOA Foundation as we launch our partnership with Rare-X, a platform dedicated to advancing research and treatments for rare diseases. This video introduces patients, families, and the ADOA community to the Rare-X data collection project—a powerful step forward in developing new therapies, drugs, and devices for Autosomal Dominant Optic Atrophy (ADOA). Join the journey to further the research of ADOA with Rare-X here: https://rare-x.org/adoa/ In this session, you will find the following topics: 00:00 Introduction 02:01 What is Rare-X? 02:33 Patient journey in the DCP 03:44 Getting started on Rare-X 04:42 First time login process 07:14 Informed consent 09:23 General inforamtion collection 10:34 Caregiver dashboard 12:21 Data sharing preferences 14:50 Genetic testing information 15:32 Head to toe survey 19:05 Dashboard 19:40 Questions & support contact Your participation could be pivotal in helping researchers gain insights to improve ADOA treatment options. Let’s work together to drive progress in our community.