Determine Patients’ Needs
Contact registries typically are focused on including people with a specific disease or condition who may be interested in becoming involved in future clinical trials.
- Type of information stored may include:
- Patients in the registry can be notified when a clinical trial or research opportunity becomes available.
- Patients can learn about opportunities to provide feedback to the FDA and advisory committees.
- Medical researchers and Industry Partners can seek out patients to be involved in surveys, focus groups, and clinical trials.
- Allows researchers in academia and industry to identify people willing to be involved in clinical trials.
- In most cases, the system sends the information about the trial directly to the patient instead of providing the principal investigator (or PI) with the patient’s contact information.
- Being part of a contact registry does not obligate a person to join a clinical trial.
- Minimal effort to set up and maintain.
- Your group’s member contact list can provide a good base to start a contact registry.
- If disease pathology and patient population is well characterized, a contact registry may be sufficient.
- Collects only minimal, if any, information about the disease from patient or clinical perspective and therefore will not provide specific information about the disease or patient population.
- In comparison to a group’s member contact list, a contact registry database:
- Should separate contact information and other personal identifying information from health information.
- Requires clear informed consent so that those providing information know what is being done with information, how it will be stored, and who will have access.