CONSENT FORM for CEREBRAL PALSY RESEARCH REGISTRY
** VOLUNTARY **
The purpose of the Cerebral Palsy Research Registry is to provide a central location for persons with cerebral palsy (CP) to become registered as those who are interested in being contacted by researchers of the Cerebral Palsy Research Consortium of Michigan (CPRCoM) as potential research participants. This registry will help CPRCoM researchers identify and invite those who have voluntarily registered and are eligible for current and future research studies involving CP.
A research registry is a secured database that stores limited contact and demographic information about volunteer participants, and is accessible only to authorized personnel, and only with approval of the Institutional Review Board that oversees research activities for any specified research study or clinical trial.
Through research, members of the CPRCoM aim to increase their knowledge about the health and quality of life of individuals with CP. By signing up with this registry, it is anticipated that you/your child will aid researchers because of being identified as someone who is an interested and a potentially qualified volunteer for those researchers who are studying CP. Currently, the CPRCoM is comprised of the University of Michigan and United Cerebral Palsy of Michigan. Additionally, the University of Michigan has established a community partnership with the Ann Arbor Center for Independent Living.
By signing this consent, you/your child agree to participate in this registry and indicate your willingness to be contacted by a representative from the CPRCoM to participate in future research specific to CP. By agreeing to participate in this registry, you/your child are NOT agreeing to actually be a volunteer for a research study. Rather you/your child are agreeing to allow someone from the CPRCoM to contact you/your child to inform you about potential opportunities to become a research volunteer and participate in a specific study. IF you/your child are contacted, you/your child may always decline participation.
I (or Parent/Legal Guardian) authorize and allow the Department of Physical Medicine and Rehabilitation (PM&R) at the University of Michigan to have access to my/my child's medical records and to record limited medical and demographic information into this CP Research Registry (database) for the purposes of:
Permitting authorized research faculty and staff of the CPRCoM to contact me/my child about specific opportunities to participate in studies or clinical trials that apply to my/my child's diagnosis of CP.
Sending me/my child updates about CP related research findings, as well as information about various educational opportunities and/or community events from the CPRCoM.
I understand that I will be asked to complete a short questionnaire (about the person with a diagnosis of CP) immediately after signing this consent form. I understand that I am consenting to allow authorized members of the CPRCoM to contact me/my child to participate in future research. I consent to allow only the authorized faculty and staff of the Department of PM&R at the University of Michigan to access me/my child's medical records and use this information for the purposes stated above, and understand that me/my child's information will be kept in a safe and secure database located at the University of Michigan.
I/my child can withdraw consent at any time simply by calling or e-mailing an authorized member of the CPRCoM at: 734-936-6023 and/or by emailing PMR-CPRegistry@med.umich.edu . By doing so, I understand that I/my child will be removed from the CPRCoM Research Registry. In addition, if the consented individual is a minor, authorization will freeze upon the 18th birthday and this individual will be required to sign-up again for participation in this registry; a representative of CPRCoM will contact the individual to offer re-authorization.
I make this authorization of my own free will or on behalf of my child, and understand that participation in this CP Research Registry is completely voluntary. I understand there are no known risks associated with registering my/my child, nor will I/my child receive any direct and personal benefits by signing up as a volunteer participant with the the CPRCoM Research Registry. Signing-up with this registry does not require me/my child to participate in any research unless I specifically provide signed consent to do so on a study-by-study basis. My decision to participate will not affect my/my child’s clinical care - I know there are no consequences if I refuse to sign. I may request a copy of this document for my records.
This study has been approved by the University of Michigan’s Institution Review Board
(HUM# 00034648). For concerns about this study, contact: The University of Michigan Medical School Institutional Review Board IRBMED), 2800 Plymouth Road, Building 500/Room 3214,
Ann Arbor, MI 48109 (phone: 734-763-4768; fax: 734-615-1622).
If you would like a printed copy of this document, please click on the button below
By clicking the YES button, I have read the consent form and agree to participate in the Cerebral Palsy Research Registry.