Clinical Registry for Patients with Lyme and Other Tick-borne Diseases
Welcome to our Clinical Research registry for Lyme and other Tick-borne Diseases.
This Registry is a part of the Clinical Trials Network Coordinating Center (CTNCC) for Lyme and other Tick-borne
Diseases at Columbia University. The CTNCC supports the conduct of research that is focused on the goal of
identifying more effective treatments for patients with Lyme and other tick- borne diseases.
What is a Clinical Research registry?
It is an online data system that systematically collects, stores, and retrieves patient data.
The CTN Lyme Registry serves to:
- To disseminate information about ongoing clinical trials and other research in the field of Lyme and other tick-borne diseases
- To recruit registry participants to the appropriate trials
- To use the registry data to describe change in clinical status over time among registry participants
After you join the registry:
- investigators from the Lyme Research Center will contact you annually to ask you to update your contact and medical information
- research staff from the Clinical Trials Network who are recruiting individuals for a study may contact you to determine if you might be interested and eligible to participate
What types of data will be collected in the registry for Lyme and other Tick-borne Diseases ?
The CTNCC collects the following data:
- Socio-demographics
- Medical history
- Current symptoms, functional status, and quality of life
Is it secure?
Your information will be stored in an electronically secure HIPAA-compliant online encrypted database, i.e., it will protect the privacy,
security, and integrity of your health information.
How to join the registry?
To join the registry, please click here. You will be invited to create an account and fill out a number of
questionnaires. Altogether, registration will take about 30-40 minutes.
We are happy to answer your questions at: lyme_center_ctn@cumc.columbia.edu