What can my patients expect?
Recruitment into the program requires very little from the patient. A brochure will be mailed to prospective participants prior to a scheduled clinic visit. Following registration for the visit, patients will be approached and recruited; the exact logistics will be determined by the preferences, flow, and physical constraints of the particular clinic. Once consented into the program, extra tubes of blood may be drawn when patients undergo clinically ordered blood draws and any leftover blood or tissues may be used for research along with information from their medical record. Except for the extra tubes of blood, no aspects of a patient’s care will change.
What is my role?
Physicians are welcome to play as active a role as they chose. We have designed the program so that clinic flow will not be adversely affected. However, program consenters will be present in clinics and specific areas for consent discussions may be designated. Patients may inquire about the program during their physician encounters. Physicians may refer the patients to the information brochure for a phone number and web site address that they can access for more information.
Are there return of results?
Should a researcher find results that may have potential benefit to the patient, a Program Return of Research Results Board has been formed to provide a venue for investigators to report results they feel may have potential clinical significance. The Board assumes the responsibility of determining what should be done with the research results. Its mission is to ensure that any research results that could impact the clinical care of the participant be appropriately transmitted to the participant’s physician and/or relevant providers. No results will be transmitted directly to participants.