The Long-Covid Study
There is emerging evidence that many individuals who were infected with the novel coronavirus, which causes the COVID-19 disease, are suffering with persistent symptoms. To better understand the reasons behind this, the You + ME Registry is collecting valuable data from individuals who have had COVID-19.
The You + ME Registry and Biobank is a resource of detailed health information and biological samples from people living with postviral chronic illness and healthy controls. You + ME is designed to facilitate data sharing and increased collaboration between all stakeholders in post-viral chronic illness research: patients, healthy controls, clinicians, and scientific researchers.
The goal of the You + ME Registry Long-Covid study is to create an international community of patients, researchers and medical professionals, so we may further our understanding of post-viral illness together.
Join the You + ME Movement!
Have Questions? We have Answers.
What is a patient registry?
A patient registry is a place where medical information, family history and other related information from patients is collected and stored for medical research. Patient registries are used extensively in healthcare to help medical professionals better understand why and how a disease develops so they are able to conduct research that is most relevant to the needs of the patient population.
How do patient registries inform research?
The registry will facilitate future research by enabling participants to share their demographic and health information with researchers and medical professionals. By providing this information, you are giving researchers a richer understanding of COVID-19 and post-viral illness while helping them identify potential participants for new research studies. The Registry will also be linked to a biobank which is a place that stores tissue, blood or other samples from participants.
What does it mean to participate?
After signing up, people experiencing persistent symptoms following an infection with the novel coronavirus, and people who did not, complete a series of surveys on their computer, including medical history, medications, and quality of life. Participants might also be asked to provide a blood or saliva sample. The combination of data and biosamples can be used by researchers from around the world to help uncover causes and subtypes of postviral illness, and identify possible treatments.
I didn’t have persistent symptoms following my viral infection. Why should I participate?
To understand what causes a disease, it is often helpful to compare health and genetic information between those who have a particular disease, and those who do not. Any differences that can be seen between healthy individuals and those who are suffering with persistent symptoms may be the causes of what’s gone wrong. By contributing your health information and biosample (e.g. blood or saliva) you can help researchers understand causes of postviral chronic illness and potentially identify treatments.
How is my data protected?
The privacy and security of participant data is of paramount importance. Health information is anonymized and data is stored in a secure, encrypted database. Participants can drop out of the Registry at any time.
HAVING LINGERING QUESTIONS?
Email us at : Registry@SolveCFS.org