Friday, April 20, 2007

It deserves to be said again

Terry over at I See Invisible People posted last week about a study being done for people who are Bipolar. They are hoping to find genetic markers for people with Bipolar and to try to understand it better. I requested to be included in the survey and hope that they contact me. Anything I can do to bring us closer to an understanding of Bipolar and how it's passed through generations sounds good to me.

Today I learned of a study being done by the University of Chicago which hopes to sequence the DNA of 5,000 people with BPD and their family members, hoping to isolate the genes responsible.

Here’s the specifics:

Individual and Family Genetic Study Of Bipolar Disorder
Elliot S. Gershon, M.D., Project Chief

The staff of the Bipolar Disorder Genetics Research Project invites individuals diagnosed with Bipolar Disorder OR individuals with Bipolar disorder and having two or more immediate relatives with depression, mania, or mood swings to join our study. Parents are also asked to participate when available. This study is funded and approved by the National Institutes of Health.

Why Study Individuals and Families?

Why Study Individuals and Families? An inborn tendency to develop Bipolar disorder runs in some individuals and/or families. However, most relatives will never develop the illness.

In our family studies, we can find chromosome regions with genes that may cause some family members to be at risk for Bipolar disorder. As we discover the nature of each gene, we likely will be able to develop better treatments.

For testing specific genes, large numbers of unrelated Bipolar persons offer greater statistical power. So we are enrolling Bipolar individuals without available families as well.

We urge individuals suffering from Bipolar disorder, along with their family members, to participate in this scientific study which will help us better understand the causes of this disorder.

Why Should I Participate in a Family Genetic Study?

Many persons who suffer from Bipolar disorder, or who have a close relative with the disorder, have already brought themselves and/or families into the study. The reason most often given is, “If I can help prevent this from happening to anyone else, I’ll do anything.” These individuals and families share our hope that finding genetic markers and genes that increase risk for this disorder will help medical researchers understand more about its biological basis. As a result, we will likely be able to develop more effective medications.

You are an essential player in the research. Without the help of people like you and your family, no study of inherited traits can be done and little progress will be made. We depend on your participation.

How Does an Individual or Family Get into the Study?

Usually, someone who suffers from the disorder, or a close relative, contacts us. We do an initial screening on the individual previous diagnosed with Bipolar disorder or an individual that has symptoms of Bipolar. We also inquire about immediate relatives with depression, mania, or mood swings. We must receive verbal or written permission from the immediate relative prior to our contact to them on study participation.

Participants contribute the following:

1. an interview session which may be completed over the phone or in person
2. a sample of blood
3. family history interview which may be completed over the phone or in person
4. self-report questionnaires

Confidentiality

All of the information obtained by the Bipolar Disorder Genetics Research Project will remain completely confidential, even among family members. When research papers are published, no names or other identifying information about individual participants will appear. The study has a “Certificate of Confidentiality” which provides further privacy protection. The interview and blood studies are not part of any clinical medical record.

If you’ve been diagnosed, I hope you’ll consider participating. You can read more details and arrange contact by email at the link above.

2 comments:

Terry said...

I got the paperwork on it this week. The part I'm struggling over is whether to sign a release for them to get copies of my medical records. I've got awhile to decide though.

lost clown said...

I'm still waiting to hear from them.

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