Let's make a difference :) - Research for PCOS

[Vdj9]

Hi All,

DAISy-PCOS is a new research study funded through the Wellcome Trust and being undertaken at the Institute of Metabolism & Systems Research at the University of Birmingham. The research project is led by Professor Wiebke Arlt and her multidisciplinary research team, alongside support from charities Cysters, Verity, PCOS Vitality. The research project is investigating the metabolic health of 1000 women with PCOS to look for potential biomarkers to predict which women are more at risk of developing other metabolic diseases, such as diabetes, high blood pressure and heart disease. The research hopes to positively impact the treatment and management practice of PCOS within the medical profession, as well as improving quality of life and informed decision making for PCOS patients themselves. (Stated on their website).

If you are interested, please can I kindly ask if you can take part in the research and contribute to making a difference in the treatment for PCOS women and for the future generations. This is the link to the site and it will give instructions on how to take part - daisypcos.com/research/.

I took part in the study, the staff and nurses took good care of me and I was relaxed. I was told approximately only 100 women have taken part in this study and they still need 900 women in order to do the research study. If we do not have enough women to do take part in the study, the study will not go ahead.

If the study does not go ahead will result in many PCOS women and future generation PCOS women will be treated under the current "Health care" recommendation treatments for PCOS, which in my opinion, is not currently resolving the symptoms of PCOS and other health issues that come with PCOS.

Fortunately we are in a country where there is a study taken place and we can make a difference. We need to take all the opportunities to help each other and fight through this. As we are warriors.

If you know anyone else who is PCOS and will be interested in taking this study, please can you share the above information and link.

Please let me know if you gave any questions.

Thanks,

[CurlyGirl983]

Hi this looks really interesting. I emailed the contact at Kings College for more info. Thanks for sharing! Fingers crossed they reply. Can I share this via my channels too?

[aniek]

Thank you for sharing info about this study. I have contacted one of the London hospitals closest to me, to express my interest in participating. Fingers crossed I can help.

[FlamingRed]

Thank you for posting this, I have contacted the University of Birmingham and hopefully hear back from them.

[CurlyGirl983]

Hi again. So yesterday I had my DAISy PCOS appointment at Kings College London hospital. It went really well and it felt like a proper PCOS MOT because the tests are so comprehensive.

I had to do a 24-hour urine test (started the morning before), had to fast for 12 hours before doing a glucose test where i had to drink a super sugary drink then give blood every 30 mins for 2 hours. They fit you in with a cannular so it's not too uncomfortable.

In addition they took my height, weight and bmi measurements and then I had to fill in lots of questionnaires asking about my sleep, lifestyle habits and mental health. The nurses were really nice and talking to an endocrinologist actually was a great relief.

The good bit is that they will send me my test results so i can request a referral for more targeted medical support.

Kings College hub itself need at least 50 participants (I am the latest at patient 18) but i suspect that his varies across the different sites. I would recommend fellow pcos sufferers to sign up. It will give you some peace of mind while helping to improve treatment experience for the pcos community as a whole. Thanks so much for sharing this. Really helped me turn a corner.