PCOS Research at Northwestern

If you are interested in participating, please contact us:

Phone: 800-847-6060

Email: pcos@northwestern.edu

Website: www.pcos.northwestern.edu

Northwestern University is currently recruiting women, men, and girls from the ages of 8-12 for our research on PCOS.  We are also recruiting pregnant women and women with children under 5.  The purpose of these studies is to better understand the cause of PCOS and the problems associated with it.  Since PCOS runs in families, we are also trying to better understand how PCOS affects family members, and to determine if there is a way to predict if a girl will get PCOS later in life.

• Women (18 to 55 years old)
• Men (18 to 55 years old)
• Girls (8 to 12 years old)
• Pregnant Women and Women with Children 0-5 years old

Studies for Women:

Study #1: Genome Wide Association Study (GWAS) (NMH eIRB #8096)

• We are recruiting women of any age with a diagnosis of PCOS or pre-menopausal women who have symptoms of PCOS.
• Women with a diagnosis of PCOS may participate even if you are taking medicine or birth control pills.
• This study involves a single blood draw, which may be done at a lab close to you.
• Compensation: If you have a previous diagnosis of PCOS, you may be compensated $25 for the single blood draw.

Study #2: SCOR: Androgens, Genotype and Insulin resistance in PCOS (NMH eIRB #13763)

• We are recruiting overweight women 18-40 years old, with regular periods or irregular periods or PCOS who are generally in good health and are not taking birth control pills.
• Even if you are taking birth control pills there may be a way to include you in this study, so please contact us if you are interested in participating.
• The study requires between 1 and 10 visits over the course of 1 to 12 months depending on your schedule and interest in participating.
• The study involves blood testing, an MRI and a DEXA scan.
• If you choose to participate in the second part of the study you may be asked to take FDA-approved medications for study purposes.
• Compensation: up to $5200

Study #3: Metabolic Syndrome in PCOS: Precursors and Interventions (NMH eIRB #8004)

• We are recruiting women with PCOS (or who have irregular periods) between the ages of 18 and 35 who are generally in good health and are not taking birth control pills.
• Even if you are taking birth control pills there may be a way to include you in this study, so please contact us if you are interested in participating.
• The study requires 7 visits over the course of 6 months.
• Participants in this study will be on one of three different FDA-approved medications to help treat PCOS.
• Participants will receive a personalized, dietician supervised weight loss program at no charge as part of the study.
• The study involves blood testing, an MRI and a DEXA scan.
• Compensation: $725

Study #4: Neural Network Dysfunction in Polycystic Ovary Syndrome (NMH eIRB #12400)

• We are recruiting normal weight and overweight women who have regular periods and overweight women with PCOS (or who have irregular periods) who are in generally good health and are not taking birth control pills.
• Even if you are taking birth control pills there may be a way to include you in this study, so please contact us if you are interested in participating.
• The study requires between 1 and 3 visits over the course of 3 weeks depending on your interest in participating.
• Each visit involves a single blood draw and MRI.
• If you choose to participate in the second part of the study you will be asked to take FDA-approved medications for study purposes for one to three weeks.
• Compensation: up to $900

Studies for Men:

Study #1: SCOR: Androgens, Genotype and Insulin resistance in PCOS (NMH eIRB #13763)

• We are recruiting men who are brothers of women with PCOS, and men whose sisters do not have PCOS.  All participants will be in generally good health.
• The study requires 2 or 3 visits within a 2 week period.
• The study involves 2 blood tests and an MRI scan.
• Compensation: $800

Studies for Girls:

Study #1: Metabolic Syndrome in PCOS: Precursors and Interventions (NMH eIRB #8007, CMH IRB #2005-12695)

• We are recruiting 8-12 year old overweight girls who have not yet had their first period.  Girls may be daughters or sisters of women with PCOS (or who have irregular periods), or may have no relative with PCOS.
• The study requires 1 or 2 visits within a week period depending on your interest in participating.
• The study involves a blood test, and may also include another blood test and an MRI depending on your interest in participating.
• Compensation: up to $225

Studies for Pregnant Women and Women with Children 0-5 years old:

Study #1: PCOS Registry – Child (NMH eIRB #8006, CMH IRB #2006-12785)

• We are recruiting women with and without PCOS who have children between 0-5 years old.
• The study is non-invasive, and would require you to send wet diapers and growth charts to us.
• Compensation: $50 per set of diapers and growth chart

I’ll admit this…the first issue was short. This next issue (which will be out shortly) will be longer. To keep up with this trend, here at PCOS Magazine, we need help! I don’t like short, and I know you, as readers, like more pages and more content. Who doesn’t?

Do you have a background in journalism? Do you like to write? Do you have a unique story idea that you’d like to develop into a story and then contribute? If so, then we want to hear it!

Also, more advertisers means more premium content. We need advertising sales gurus who are willing to work on commission (at least staring out) to help PCOS Magazine add more advertisers to its repertoire. You have the background? Contact the editor!

Virtual copies and subscriptions are a few days away, and we’ll make an announcement here when that option is ready.

In this issue are some great articles about the nutritional needs of teens with PCOS by Angela Grassi of PCOS Nutrition, an introduction to the inCYST Network and Monika Woolsey, and relevant diabetic information you might not have known about. Holly Amarandei talks to us about learning to love exercise, and there’s a great article about dealing with the long-term emotional effects of chronic illness.

Let us know what you think! We’d love to hear your comments on this issue, and if you have ideas for the November/December issue, contact us!

PCOS Magazine is slated to hit the proverbial newsstands next Wednesday, Sept. 30. I will be posting subscription links (very obvious for all to see) on both the PCOS Magazine website as well as Facebook and most likely Twitter. I will also post information to these two blogs, provided I can access the one now attached to the magazine’s website. In addition to columns by Angela Grassi, Monika Woolsey and Holly Amarandei, there will also be a great article about the long-term emotional effects of PCOS and other chronic illnesses, featuring information from women and girls like you with PCOS. I guarantee it’ll be a good read.

On the personal front, I’ve now been taking Byetta almost a month. Getting ready to move on to the 10mcg dose. However, about a week ago started getting the requisite funky sore throat and now I have some minor oral (mouth) soreness. Couldn’t find much online about the oral soreness, but wonder if it’s still possible. Mind you, at the same time, my sinuses started getting inflamed again, which leads to my cheeks and upper palette swelling a little bit…so it could be that. If anyone’s had mouth soreness on Byetta, I’d love to hear about it. Want to make sure I’m not completely nuts.

There are all sorts of (great!) changes ahead. First off, readers will be able to access the magazine, via subscription AND single copy, either hard copy or virtually through Issuu and MagCloud. Monika Woolsey is going to update us on her PCOS workshops, and readers will find out about big (and good) changes with Project PCOS.

Not changing is Angela Grassi’s column! She’s back with another great piece, this time about the nutritional needs of teens with PCOS.

The new PCOS Magazine website will be up and running by the end of this week. It will include writer’s guidelines if anyone would like to submit articles, etc., to the magazine, as well as a page of resources. It’s a work-in-progress, so bear with us while these changes happen. More content will be added constantly (and an announcement will be included here as that happens)!

So, early next week, check for the new site! By the way, if you’re interested in advertising either in the magazine or on the magazine’s website, contact Linda Harvey!

Project PCOS will continue with its renewed focus on reaching out to medical and health professionals, primarily, and laypeople, secondly. Look for a new campaign as well.

If you’re interested in lending a hand, or have any ideas, please leave me a comment here, or a message at info@projectpcos.org, OR at pcosstories@gmail.com.

• What did it feel like, as a teenager, to be diagnosed with PCOS?
• How has your perspective on PCOS changed since your diagnosis?
• As an adult, what advice would you give to a teen girl dealing with a new PCOS diagnosis?
• How do you feel now as an adult dealing with PCOS? Has your perspective changed any since your diagnosis?

You can send your stories to me at pcosstories@gmail.com. A pseudonym will be used with your story in the book, so that confidentiality is maintained. If you have any questions, let me know!

THANKS AGAIN!!!