A Contact Registry is where patients or their caregivers register themselves to help facilitate research and to be contacted about applicable information, related activities, future studies, and other research opportunities.
RAREwithCOVID is open to ANY Rare Disease patient who has or had COVID-19.
Yes, there are multiple ways to stop your participation. This can be done at any time. There are settings inside the data collection platform to allow for this. You can also email firstname.lastname@example.org and ask to be withdrawn.
Global participation is welcomed; however, the RAREwithCOVID forms to collect your information are only available in English.
Yes, the system will allow for a caregiver to add one or more patients.
By participating and providing your information, you will be helping inform progression of COVID-19 among your Rare Disease community. Additionally participants may be able to connect with the researchers who are running clinical trials and studies focused on COVID-19.
You will have free access to the Matrix rare disease platform for as long as you participate in RAREwithCOVID. Additionally, the Matrix platform will allow you to track and manage medications, symptoms, activities, and more.
Your information will be use to improve awareness of COVID-19 among the Rare Disease communities and to facilitate opportunities for your participation and enrollment in clinical trials and studies.
The data collection platform used to collect your information adheres to all regulatory requirements (HIPAA, GDPR, and 21 CFR Part 11) to assure data quality, privacy, and security are maintained at all times. related to privacy and security. Only authorized individuals will be able to access your information.
RAREwithCOVID is working with patient groups to provide appropriate insights back to their communities. If you are part of a Patient Group interested in information sharing, please contact email@example.com.
Yes, this Contact Registry is approved through Advarra IRB.
MATRIX is a modern platform built by Across Healthcare exclusively for the Rare Disease community to help patients and caregivers in their daily pursuits with their disease. The platform and standard operating procedures adhere to HIPAA, GDPR, and 21 CFR Part 11 guidance to assure data quality, privacy, and security are maintained at all times.