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  • Inherited Neurologic Disease (DNA Banking Research Project)
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Overview

Title:

DNA Banking Research Project

Owner:

Arijit

Date:

04/18/2013


Project Title:

Inherited Neurologic Disease (IRBMED HUM#00025895)

Project Summary:

The goal of this project is to identify new genes and new mutant alleles responsible for a broad range of inherited neurologic disorders. We anticipate identifying individuals seen in our clinics as potential carriers of previously unrecognized inherited neurologic diseases or new mutant alleles. We will obtain DNA samples in the form of blood samples, saliva, or cheek swabs to store DNA samples. Information about subjects' clinical features and family histories will be archived as well. The DNA samples and clinical information will be used to identify new genes and new mutant alleles causing neurologic disease.

DNA Banking Procedure:

1)   Who is Eligible?  Our IRB approval is for virtually any genetic or potentially genetic neurologic disease.  This includes both suspected new diseases or situations where a known disease of research interest is suspected. 

2)   Informed Consent:  Discuss the procedures with the patient(s) and relevant family members.  An array of relevant consent documents and assent documents can be downloaded from this site.  These documents include consents for patients and their relatives, and assents for children and for those patients who are unable to provide informed consent themselves.  For adult patients who have a legal representative, please make certain to get a copy of the durable power of attorney or power attorney. A copy goes to medical record (scanned).

Please make it clear that this is a research undertaking, not routine clinical care.  Results of these studies are not to be used for diagnosis of genetic disorders.  If an abnormality is discovered for which clinical testing is available, then you should contact the patient's physicians about the availability of that test(s).

Note also that there is a check box in the consent to allow material to be shared with investigators at other institutions.  We strongly urge you to discuss sharing of samples and ask patients to allow such sharing.  This would markedly enhance the utility of these samples

Once signed, the relevant consents/assents need to be stored properly. There should be 3 original signed copies.  One copy goes to the participant, one to the medical record (scanned), and one should be delivered to our Research Office for storage.

Arijit Bhaumik

Research Administrator

Michigan Alzheimer's Disease Center,

2101 Commonwealth Blvd. Suite D,

Ann Arbor MI 48105

Phone: 734-936-8281

Email: arijit@umich.edu

3)   Sampling:  We are approved for blood, saliva, and cheek swabs as sources of DNA.  We are approved to have MCRU personnel obtain the specimens. You can obtain them yourself but using MCRU makes storage easier.  Visit the MICHR website for information on using these services (http://www.michr.umich.edu/services/mcru).  We are approved to store DNA in the Michigan Brain Bank (http://www.brainbank.umich.edu/).  The Dept. has agreed to initially capitalize storage but eventually contributions will have to be levied to support this activity.  The shortcode is: 318327. If you have any questions about the shortcode, please contact Stacey Jenkins email:sraptis@med.umich.edu

4)   Database:  All samples need to be accompanied by a minimum amount of data, which will be recorded in a RedCap database.  The minimum dataset is attached in the PDF links below. Please use the research data forms that have been generated in RedCAP for recording the data. After obtaining the sample(s) and consent(s), please forward this information to

Sherry Teboe, Data Coordinator,

Michigan Alzheimer's Disease Center,

2101 Commonwealth Blvd. Suite D,

Ann Arbor MI 48105

Phone: 734-936-0836

Email: steboe@umich.edu

5)   Using Samples:  The Biorepository will make DNA available on request. Under our IRB approval, samples can be shared with other investigators, either here or at other institutions. 


Data Collection Forms, Assents & Informed Consent Forms:

Data Collection Form:DataCollectionForm_InheritedNeu1.pdf

Subject Consent - Consent-Subject-Clean.pdf

Inherited Relative Consent - Consent-Relative-Clean.pdf

Relative Assent for Cognitively Impaired Adults - Assent-Relative Cog Impaired Adult-Clean.pdf

Subject Assent for Cognitively Impaired Adults - Assent-Subject-Cog Impaired Adult-Clean.pdf

Subject Assent for Cognitively Impaired Child - Subject Assent_Cog Impaired Child_08-08-2014 Clean Copy.pdf

Relative Assent for Cognitively Impaired Child - Assent-Relative Cog Impaired Adult-Clean.pdf

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