Research OutSmarts Endometriosis Study is ongoing

ROSE-logo-FINAL1

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)

Email: ROSE@northwell.edu

Webpage: https://www.feinsteininstitute.org/rose-research-outsmarts-endometriosis/how-get-involved/

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.

An Endometriosis Study Needs Our Help

Research Outsmarts Endometriosis logo

The ResearchOutSmarts Endometriosis (ROSE) Study has been ongoing for a few years and they still need our help.  They’ve recently 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).

Also, they’d still like the help of parents, siblings, or children of someone who suffers from Endometriosis.  This goes for men and women!  I know I’ll be poking my brothers and mother for 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),  send them an email, visit their webpage, or view their Flyer.

*And if you talk to Margaret, tell her Lisa and Bloomin’ Uterus say hello*

Why I support the Endometriosis Foundation of America

Bloomin' Uterus logo surrounded by question marks

Based on yesterday’s post about the Endometriosis Foundation of America donations, some of you have asked what outreach programs the EFA offers.  What are they doing with the money they collect from donations?  How are they helping raise awareness for Endometriosis?  How are they helping with research?  How are they helping EndoSisters with their disease?

Well, ask and you shall receive!

With their permission, I’ve posted a brief summary of their programs and efforts:

Endometriosis

  • An often painful disease affecting multiple body systems
  • Occurs when tissue similar to the endometrium (lining of the uterus) is found in areas outside of the uterus
  • Approximately 1 out of every 10 people born with a uterus live with endometriosis

The ENdometriosis: Promoting Outreach and Wide Recognition (The ENPOWR) Project

  • The EFA’s school- and community-based education and outreach program, consisting of a 45-minute interactive discussion differentiated for specific audiences
  • Supported by significant grants from the New York State Senate and Department of Health ($650,000 over three years)
  • To date, the ENPOWR Project has made 310 presentations to sites throughout New York City, Long Island, Albany, Syracuse, Rochester, and Westchester, reaching over 7,400 adolescents
  • ENPOWR has a 91% return rate to sites

The ROSE (Research OutSmarts Endometriosis) Study

  • The first project in the United States to solely investigate endometrial tissue to the deepest genetic signature
  • The goal of the ROSE study is to investigate the causes of endometriosis and bring improved diagnostics and treatments for women with the disease
  • The EFA’s sponsorship of ROSE at the Feinstein Institute is one of our crowning achievements, and just the beginning of a long-term partnership in endometriosis research

MIT Center for Gynepathology Research

  • Established in December 2009 by Linda G. Griffith, the School of Engineering Teaching Innovation Professor of Biological and Mechanical Engineering and director of the Center
  • The country’s first research center in gynepathology
  • The center is currently working on creating a software application/mobile app to raise disease awareness and to gather better symptomatic data from patients, starting with their first doctor’s visit

Annual Medical Conference

  • An annual gathering of medical professionals to address the controversies surrounding endometriosis, improve treatment options, and to establish that the disease must become a research priority
  • For 3 years, the EFA hosted a Nurses Conference, a separate educational event for nursing professionals
  • Beginning in 2015, our Medical Conference will include all allied health professionals
  • Unable to attend (like myself)?  You can watch (for free!) videos of their past conferences.

Annual Patients’ Day

  • A multi-disciplinary collaboration for women and their loved ones to meet each other, share their journeys, and “ask the experts”
  • The Annual Patient’s Day usually falls within the timeframe of their medical conferences.  

Blossom Ball

  • The EFA’s annual gala and sole fundraising event to support efforts to increase disease recognition, provide advocacy, facilitate expert surgical training, and fund landmark endometriosis research. Each year they host the Blossom Ball as the fundraiser.

The Endometriosis Foundation of America is doing a lot for our disease; not only searching for a cure, but educating women, their loved ones, nurses, and doctors alike.  I hope you can see why I choose to support their efforts through my Bloomin’ Uterus fundraising (the walk, the buttons, and the t-shirt sales).  If you would like to support the EFA, you can either do so through my fundraising efforts or directly through the EFA’s webpage.  Don’t want to support the EFA, but do want to support endometriosis research, education, and awareness?  There are so many organizations out there!  Do the research, find the one you feel best about, and give it a go! 🙂  There are no wrongs or rights here; only action.

Research Outsmarts Endometriosis

ROSE-logo-FINAL1

For those of you with Endometriosis, The Feinstein Institute was commissioned by the Endometriosis Foundation of America to conduct a study of 200 women each year.  It’s time to do something! We (the women!) provide either a blood sample or a saliva sample, as well as answer a few questions, and (optional) provide a sample of our menstrual blood.  Some women are even able to provide samples that were biopsied in past surgeries, and can ask for the future surgery biopsied tissues to be handed over as well.  Members of your family who do not have Endo may also participate.  Again, trying to study all aspects of this disease…including those NOT affected.

The Feinstein Institute will process all of this data and research to help understand Endometriosis on a cellular and genetic level!  One day there will be better treatments. Better answers.  And a CURE!  Steps like these will only lead to the right direction.

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