Join the PLRC Registry
The PLRC Registry is an user-friendly registry platform, designed by patients for patients, to connect people with clinical trials and research studies in Long COVID and associated conditions. The PLRC Registry is powered by CareEvolution MyDataHelps.
PLRC will make your participation in the registry even more impactful by inviting you to take part in regular research surveys. The information you provide in these research surveys will help us understand key factors influencing changes in Long COVID status over time. You can opt-out research surveys and update your participation
preferences anytime.
Who can participate
Anyone 18 or older, anywhere in the world, can join the PLRC Registry. We welcome people with Long COVID or other infection-associated chronic illnesses, as well as anyone who wants to help improve understanding and treatment of these conditions!
How it works
Enroll & Check-In
Answer a short survey upon joining.
Optional Data Sharing
Choose to connect your electronic health records and wearable devices.
Customize Your Experience
Decide if you want to be contacted about research studies and clinical trials.
Ongoing Surveys
Every three months, complete a brief survey on your Long COVID status, any recent COVID-19 infections, and how you spend your time.
FAQ
What is a patient registry and what is it for?
A patient registry is a database that collects and stores information from individual patients over time. Researchers can use the registry to collect patient information which allows them to study diseases over many years. Researchers can also use a patient registry to connect with people who may be eligible for participating in other research studies.
What types of patient information are stored by the registry?
Patient information stored by the registry includes demographic data (e.g. data of birth, sex, age, gender identity, race and ethnicity) and disease-related data (e.g. other health conditions and date of symptom onset).
How will the data be used?
Data will be used to study when your illness started and relapse and remission events that have occurred over time. Upon consent, participant data may be used to match patients to appropriate research studies. Upon being matched with studies they may be eligible, participants receive a notification e-mail with information about this study. PLRC Registry protects the participants’ identifiable information, so that no one can link their identifiable data back to them.
Why are you inviting people without Long COVID to participate?
Researchers often use comparisons between groups of those who have a health condition and those who do not. Comparison groups provide crucial insights into the nature of Long COVID—for example, how Long COVID compares to healthy controls, or to other diseases.
Why are you asking my date of birth?
We ask for your date of birth to confirm you are eligible to join the registry or any future research studies.
Is my information identifiable?
No. Identifiable data is replaced with a random code in the dataset so that no one can connect the data back to you.
Will my contact information be added to any mailing lists?
No, your contact information will not be automatically added to any mailing lists. However, you may consent to receive email notifications regarding your participation in the registry.
Can I delete my data at any time?
Yes. Participation is voluntary and you may choose to withdraw anytime. You may stop participating at any time by contacting registry@patientledresearch.com .
What is the PLRC Registry AI policy?
PLRC Registry data will not be used for the development of any artificial intelligence systems.
Who does PLRC share Registry data with? How are these partners chosen?
The PLRC Registry data is intended to serve researchers in academia and industry studying Long COVID and infection-associated chronic conditions. PLRC considers requests to work with Registry data on a case by case basis. Patient-researchers will evaluate the study proposal and determine access to registry participant data. We will not accept requests from studies involving cognitive behavioral therapy (CBT), graded exercise therapy (GET), or any other behavioral intervention. We require all studies to be evaluated by an independent ethics committee.
How is my information protected from legally enforced disclosure?
The PLRC Registry is protected by an NIH Certificate of Confidentiality. This means we cannot be legally compelled to disclose identifiable participant information.