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January 26, 2007

U-M Health System launches clinical research study registry

Patients with many different medical conditions, and healthy people, needed

ANN ARBOR, MI – A new tool added to the Engage Web site that educates and informs prospective volunteers to University of Michigan clinical research studies was launched today. The Engage Registry makes it easier than ever for people to express their interest in clinical research and potentially find a match among the many U-M clinical studies seeking human volunteers.

Engage LogoThrough the new registry’s online registration process, information individuals provide becomes part of a database used by investigators and coordinators involved with studies that are seeking volunteers. People who register with Engage can choose for their information to become available to research investigators and coordinators and to be contacted if there is a possible match. A continually updated list of clinical studies recruiting volunteers is available to all who register.

“The registry is a preliminary screening tool. It allows patients and healthy people alike to register their interest in participating in studies, and it provides study staff a means for confidentially considering people who may be interested, and potentially, who would be eligible for their study,” says Dorene Markel, director of Clinical and Translational Research at UMHS.

The Engage Web site allows potential volunteers to search for studies and get details on what each study involves, what kinds of people are needed, and a phone number or e-mail address to learn more. Historically, patients and healthy people interested in volunteering have needed to visit the site routinely in order to stay informed about the most recently opened clinical studies. With the addition of the registry, prospective volunteers can continue to visit and scan the lists of studies, but they now have the option of letting the Registry sort through their information to potentially find a match to a clinical study at the U-M.

First-time visitors to the Registry set up a user name and password in order to establish a confidential and protected environment for the information they will be asked to provide, which includes contact information, basic demographics, study preferences and some medical history.  Prospective volunteers who are U-M patients may also grant access to their medical record, in order to provide a more complete medical history.

Registrants also specify how to be contacted – by telephone, mail, or e-mail, or not at all. In addition, people can de-activate their registry information at any time. After information is de-activated, no researchers are able to view it. Registrants with active accounts can return as often as they choose for a list of potential studies or to update their profile.

“The Engage Registry is simple and user-friendly. It allows people ample latitude for registering their interests, providing health information and specifying who can view their health information, as well as whether the registrant will contact the study, or whether the study will contact the registrant,” Markel says.

Individuals who enter their information in the registry, which is voluntary, are never under any obligation to participate in a study. And choosing to register, or not register, does not affect a patient’s care in any way. Nor is there a charge to patients or their health insurance for being in the Engage Registry.

The Registry is at www.umms.med.umich.edu/registry/

NOTE TO JOURNALISTS: a number of registrants have indicated their willingness to answer journalists’ questions relating to the registry.

 

Written by Mary Beth Reilly

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