Sample Research Registry Informed Consent Form (Page 3 of 5) in pdf

University of Pittsburgh

Institutional Review Board

IRB #:

Approval Date: ___/____/_____

Renewal Date: ___/____/_____

It is unlikely that you will receive any direct benefit as a result of your participation in the Center

for XX Disease Research Registry.

However, medical record information contained within the Research Registry will be used for

research studies directed at improving our knowledge and treatment of XX disease and this

knowledge may benefit patients with XX disease in the future.

Will I or my insurance provider be charged for my participation in the Research Registry?

There will be no costs to you or your insurance provider to participate in this Research Registry.

Will I be paid for my participation in the Research Registry?

No, you will not receive any payment for participating in this Research Registry.

Who will know about my participation in this Research Registry?

Any information from your medical records that is placed into this Research Registry will be

kept as confidential (private) as possible. In addition, you will not be identified by name in any

publication of the results of research studies involving the use of your medical record

information unless you sign a separate consent form (release) giving your permission.

What is the nature of my medical record information that will be placed into the Research

Registry?

All of your past, current and future medical record information related to your XX disease will

be recorded into the Research Registry. Since medical conditions and treatments not related

directly to your XX disease may affect XX disease and/or its treatment, it is likely that all of

your existing and future medical record information will be placed in the Research Registry.

This information will be collected from your Center for XX Disease Clinic records, hospital

records and, if applicable, private physician records.

Who will have access to my identifiable medical record information contained in the Research

Registry?

Access to your identifiable medical record information contained within this Research Registry

will be limited to investigators associated with the Center for XX Disease and their research

Participant’s Initials _____

Page 3 of 5

Sample Research Registry Informed Consent Form Page 3