The ResearchOutSmarts Endometriosis (ROSE) Study has been ongoing for a few years and they still need our help. They received the 2018 Innovation Challenge Award for researching potential diagnostic tests for menstrual effluent (aka period blood) – congratulations you guys!! I’ve participated in the study and so can you. Yes, you!! But you must be over the age of 18 and NOT pregnant or breastfeeding. Don’t live in the New York area and feel like you can’t help in any way? That’s not true! You can work via e-mail and express mail.
What’s the study all about? Per their webpage, “The goal of the ROSE study is to investigate the causes of endometriosis and bring improved diagnostics and treatments for women with endometriosis…Researchers involved in ROSE are using several approaches to study endometriosis. These include efforts to better understand the genetic basis of the disease and relate this what is occurring at the cellular level in the disease, with particular emphasis on the role of stem cells and the immune system.”
What do you have to do? You sign a consent and answer a few questionnaires. Once enrolled, you provide a DNA sample either through a mouth swab or a blood sample (if you’re local), provide an authorization to collect tissue samples from your prior/future surgery(ies), and provide a sample of your menstrual blood (this part is totally optional). When I first participated in the study in late 2014, they only used a diva cup for collecting menstrual blood (which, due to my double cervix, I couldn’t do). But now they’ve offered the use of a small sponge to collect menstrual fluid, too. SO I GET TO DO IT NOW! 😀
I’ve also kept in touch with my contact with the ROSE study and sent them the op reports, pathology reports, and photographs from my 2016 and two 2018 surgeries. If you’ve already participated in the ROSE study and have had subsequent surgeries, please feel free to keep them updated!
Also, the folks at ROSE still need the help of parents, siblings, or children of someone who suffers from Endometriosis. This goes for men and women! I know I’ve poked my brothers and mum to help with this one! Please feel free to pass the ROSE Study link on to your immediate family members! They would answer a questionnaire, provide that same mouth swab DNA sample (or a blood sample), and have the option to provide some period blood (well, the ladies would). I always hear, “I wish there was something I can do to help…” and now they can!
Don’t have Endometriosis? YOU CAN STILL HELP! The ROSE study is looking for control groups (aka women without Endometriosis) to compare to those with Endometriosis. You’d go through the same process: questionnaire, DNA sample, period sample (again…this last bit is totally up to you).
Reach out to someone on the ROSE team by contacting them:
Telephone: (516) 562-ENDO (3636)
A flyer for the ROSE Study can be read here if you’d like more information: ROSE Endo Flyer 2018_0522
*And if you talk to Margaret, tell her Lisa and Bloomin’ Uterus say hello*
Together we can help push for a better understanding of Endometriosis…and one day: a cure.