Team:Rochester/Human Practices

UR igem wiki


  • Overview
  • Human Practices - Insights from the Community
  • Gynecologist – Dr. Gubbels

    Dr. Ashley Gubbels is a fellowship-trained minimally invasive gynecologic surgeon. She specializes in chronic pelvic pain conditions such as endometriosis, interstitial cystitis, pelvic muscle pain, and neuropathic pain conditions.
    [Endometriosis patients] are really touched when they find someone that just listens and takes them seriously… and that’s really heartbreaking.” Ashley Gubbels,MD

    Industry - Diva Cup - Sophie Zivku

    Sophie is the Corporate Communications Manager at Diva International Inc, one of the largest corporations that manufactures menstrual cups and is also devoted to women rights.

    Patient - Heather Guidone

    Heather is the Surgical Program Director for the Center for Endometriosis Care, Atlanta, GA. She has a personal history and diagnosis of advanced endometriosis. Heather has worked in the endometriosis community for nearly 30 years, garnering an international reputation for her tireless efforts to advance various clinical, advocacy, legislative, media, research, education, and policy initiatives on the disease.

    K12 teachers

    Mr. Curtis Birthwright and Ms. Kathryn Frank are grade 5 teachers in John Walton Spencer School #16, in Rochester, New York. Both teachers have extensive knowledge and experience teaching elementary school students.

    Foundations - Endo UK

    Endometriosis UK (EUK) is an organization that aims to provide support service, information, and a community for people affected by endometriosis, mostly in the United Kingdom.

    Foundations: Endometriosis Union - Denmark

    Endometriosis Union is a Danish non profit association in Denmark. This organization seeks to support women with endometriosis through its own funded scientific research in endometriosis, collaborative initiatives with doctors, and by providing endometriosis patients with access to clinical and alternative treatment options for the disease.

    Sustainability organization - RITVA

    RITVA is a non-profit organization led by young sustainable menstruation activists with a nationwide network of volunteers in India. They are working towards women empowerment by creating a healthy and taboo-free space for menstrual awareness. They have worked continuously towards their mission and educated around 45,000 women about menstrual hygiene and the importance to shift towards sustainable menstruation by using reusable pads.

    Industry - Pixie Cup - Amber English

    Amber English is the Co-Founder of Pixie Cup Inc, a feminine hygiene company producing menstrual cups and different cup cleaning and sterilizing products as well as supporting women’s rights.

  • Feasibility Analysis
  • A feasibilty analysis was conducted after consulting with the stakeholders initially.

  • Engagement
  • Integrated Human Practices
  • Introduction:

    We interacted directly and indirectly with communities affected by endometriosis and who would influence our project. We tried to understand and integrate every stakeholder’s viewpoint about the issues surrounding endometriosis patients, diagnosis, treatment, and education. We incorporated their comments, suggestions, and improvements about the biomarker selections, educational material, SAA ideas, and hardware designs. We asked their opinion about what an ideal endometriosis detection product would consist of and what we should take into consideration for it. We aim to integrate as many comments and suggestions as possible into our project so that the developed endometriosis detection method is efficient and user-friendly.

    Expert Feedback:

    Dr. Gubbels

    We realized that without an in-clinic option for a non-invasive diagnosis, an at-home diagnostic would not be the most useful application of our research on biomarkers. An in-clinic option would allow for more precise measurement as well as address the lack of education on female reproductive healthcare amongst general practitioners. With this in mind, we asked our collaborator, Dr. Gubbels, if she would recommend we move forward with an at-home or in-clinic design.

    Dr. Martin Rudnicki

    Dr. Martin Rudnicki is a clinical professor at the University of Southern Denmark. Dr. Rudnicki suggested having a person who has endometriosis explain all of the information in relation to their personal experience. He said that many teens with endometriosis feel alone and have no one to talk with when they suffer from the disease. So, it is nice to have them see other people with similar symptoms and sufferings. These teens might not want to read long articles, instead, he said we should post interviews on social media that may grab their attention. Therefore, we decided to include a personal story from one of our team members, featuring a patient talking about endometriosis.

    Dr. Metz and Dr. Gregersen

    Dr Christine N. Metz is head of the laboratory of medicinal biochemistry and a professor in the Center of Molecular Medicine at the Feinstein Institutes for Medical Research.
    Dr. Gregersen has been working in the area of genetics for over two decades and led several major international consortia to study the genetics of rheumatoid arthritis, systemic lupus, myasthenia gravis, myositis, and other autoimmune disorders.

    Dr. Idhaliz Flores

    Dr Flores is a professor of Basic Sciences, and OB-GYN at the Ponce Health Sciences University (PHSU) in Ponce, Puerto Rico. Since 2001, she has directed the Endometriosis Research Program (ERP) of the Ponce Research Institute. Her research interests include discovery of molecular biomarkers, inflammatory, and genetic/epigenetic factors of endometriosis and infertility.

    Danielle Keiser

    Danielle is the Executive Director of Menstrual Health Hub (MH Hub), an female health non-profit organization that helps connect groups with female health experts and advocates. We originally met with her to help us connect with more endometriosis professionals. She said “you have to understand menstruation to understand endometriosis.” meaning that we need to educate the public about how menstruation works in order to make it clear to them how endometriosis works. So our team took the time to design a portion of our educational materials educating the public about the science and biology of women’s reproductive health, myths about endometriosis, as well as other women's reproductive diseases in our educational material.

    Dr. Nicholas Hammond

    Dr. Hammond is the assistant director of the workshop program provided by Center for Excellence in Teaching and Learning (CETL) at the University of Rochester, has expertise in Universal Design for Learning (UDL).

    Dr. Benjamin Miller and Jeffrey Beard

    The Miller lab is one of the University of Rochester Medical Center labs. Dr. Miller is the principal investigator and Mr. Beard is a Ph.D. candidate who is currently working on cost-effective, robust, and user-friendly imaging methods. One of their main focuses is observing biomolecular interactions through developing new optical sensing technologies.

    Endometriosis Foundation of America:

  • Socioeconomic Challenges and Sustainability
  • Early theories surrounding the presence and pathophysiology of endometriosis stated that it was a disease exclusively white women experienced (Bougie et al., 2019). Supporting this, by the 1950s literature reviews on endometriosis declared that there was an obvious connection between the presence of the disease and white wealthy women (Bougie et al., 2019). While outrageously false that endometriosis only affects wealthy white women, the claim has added to the racial bias colored women experience in healthcare (Hall et al., 2013). Yet, limited research to date has been achieved to aid in understanding how historical and current prejudice has influenced the research about the disease. Furthermore, the first review that characterizes endometriosis for transmasculine individuals has only emerged in research within the last year (2020) (Shim et al., 2020). The socioeconomic status of endometriosis patients and the implicit and systemic biases in healthcare have only added to the misdiagnosis under-diagnosis of the disease (Shim et al., 2020).

  • References
  • Ballard, K., Lowton, K., & Wright, J. (2006, October 24). What's the delay? A qualitative study of women's experiences of reaching a diagnosis of endometriosis. Fertility and Sterility.

    Bese T, Simsek Y, Bese N, Ilvan S, Arvas M: Extensive pelvic endometriosis with malignant change in tamoxifen-treated postmenopausal women. Int J Gynecol Cancer. 2003

    Bougie, O., Healey, J., & Singh, S. S. (2019). Behind the times: revisiting endometriosis and race. American Journal of Obstetrics and Gynecology, 221(1), 35.e1-35.e5.

    Chase, D. J., Schenkel, B. P., Fahr, A. M., & Eigner, U. (2007). A prospective, randomized, double-blind study of vaginal microflora and epithelium in women using a tampon with an apertured film cover compared with those in women using a commercial tampon with a cover of nonwoven fleece. Journal of clinical microbiology, 45(4), 1219-1224.

    D'Hooghe TM, Mihalyi AM, et al., Why we need a noninvasive diagnostic test for minimal to mild endometriosis with a high sensitivity,2006

    Dhamangaonkar, P. C., Anuradha, K., & Saxena, A. (2015). Levonorgestrel intrauterine system (Mirena): An emerging tool for conservative treatment of abnormal uterine bleeding. Journal of mid-life health, 6(1), 26–30.

    Duffy, J. M. N., Arambage, K., Correa, F. J. S., Olive, D., Farquhar, C., Garry, R., Jacobson, T. Z. (2014, April 3). Laparoscopic surgery for endometriosis - Duffy, JMN - 2014: Cochrane Library. Cochrane Database of Systematic Reviews.

    Dunselman, G.A, N Vermeulen, C Becker, C Calhaz-Jorge, T D'Hooghe, B. De Bie, O Heikinheimo, et al. 2014. "ESHRE guideline: management of women with endometriosis." Human Reproduction 29 (3): 400-412.

    Eijk, A. M. van, Zulaika, G., Lenchner, M., Mason, L., Sivakami, M., Nyothach, E., Phillips-Howard, P. A. (2019, July 16). Menstrual cup use, leakage, acceptability, safety, and availability: a systematic review and meta-analysis. The Lancet Public Health.

    Farland, L. V., & Horne, A. W. (2019). Disparity in endometriosis diagnoses between racial/ethnic groups. BJOG: an international journal of obstetrics and gynaecology, 126(9), 1115-1116.

    Farquhar C. (2007). Endometriosis. BMJ (Clinical research ed.), 334(7587), 249–253.

    Gao, X., Outley, J., Botteman, M., Spalding, J., Simon, J. A., & Pashos, C. L. (2006). Economic burden of endometriosis. Fertility and sterility, 86(6), 1561-1572.

    González Ramos P, Royo Manero P, et al., University of Zaragoza (Spain). PGR-1 Hot-Dog: a new rat model for the study of the experimentally-induced endometriosis in rats. Proceedings of the 13th World Congress on Human Reproduction: 5-8, 2009.

    Hall, W. J., Chapman, M. V., Lee, K. M., Merino, Y. M., Thomas, T. W., Payne, B. K., Eng, E., Day, S. H., & Coyne-Beasley, T. (2015). Implicit Racial/Ethnic Bias Among Health Care Professionals and Its Influence on Health Care Outcomes: A Systematic Review. American journal of public health, 105(12), e60–e76.

    Holicov, M., Tîrnovanu, M., Onofriescu, A., Moscalu, M., Nemescu, D., & Onofriescu, M. (2015). Ethical Challenges In The Diagnosis And Treatment Of Endometriosis. Revista Romana de Bioetica, 13(2).

    Holicov, Monica & Tirnovanu, Mihaela Camelia & Onofriescu, Alina & Moscalu, Mihaela & Nemescu, Dragos & Onofriescu, Mircea. (2015). ETHICAL CHALLENGES IN THE DIAGNOSIS AND TREATMENT OF ENDOMETRIOSIS. Revista Română de Bioetică. vol13. 338-348.

    Institute for Quality and Efficiency in Health Care (IQWiG); 2006-. Treatment options for endometriosis. 2008 Feb 25 [Updated 2017 Oct 19].

    Institute for Quality and Efficiency in Health Care (IQWiG); 2006-What are the treatment options for heavy periods? [Updated 2017 May 4]. Available from:

    Jade. “Blog: World Water Day.” CottonConnect, CottonConnect, 5 June 2018,

    Kamiyama, S., Teruya, Y., Nohara, M., & Kanazawa, K. (2004). Impact of detection of bacterial endotoxin in menstrual effluent on the pregnancy rate in in vitro fertilization and embryo transfer. Fertility and sterility, 82(4), 788-792.

    Kinkel, K., Frei, K. A., Balleyguier, C., & Chapron, C. (2006). Diagnosis of endometriosis with imaging: a review. European radiology, 16(2), 285-298.

    Koczuła, Katarzyna & Gallotta, Andrea. (2016). Lateral flow assays. 10.1042/EBC20150012.

    Lemaire, G. S. (2006, March 9). More Than Just Menstrual Cramps: Symptoms and Uncertainty Among Women With Endometriosis. Wiley Online Library.

    Loroño-Leturiondo, M., & Davies, S. R. (2018). Responsibility and science communication: scientists’ experiences of and perspectives on public communication activities. Journal of Responsible Innovation, 5(2), 170–185.

    Louis, G. M. B., Hediger, M. L., Peterson, C. M., Croughan, M., Sundaram, R., Stanford, J., ... & Giudice, L. C. (2011). Incidence of endometriosis by study population and diagnostic method: the ENDO study. Fertility and sterility, 96(2), 360-365.

    Magon N. (2011). Gonadotropin releasing hormone agonists: Expanding vistas. Indian journal of endocrinology and metabolism, 15(4), 261–267.

    Manero, M. G., Royo, P., Olartecoechea, B., & Alcázar, J. L., Endometriosis in a postmenopausal woman without previous hormonal therapy: a case report. Journal of medical case reports, 2009

    Mayo Clinic Staff. “Endometriosis.” Mayo Clinic, Mayo Foundation for Medical Education and Research, 16 Oct. 2019,

    Mitchell, M. A., Bisch, S., Arntfield, S., & Hosseini-Moghaddam, S. M. (2015). A confirmed case of toxic shock syndrome associated with the use of a menstrual cup. Canadian Journal of Infectious Diseases and Medical Microbiology, 26.

    Moen, M. H. (2017). Endometriosis, an everlasting challenge. Acta Obstetricia et Gynecologica Scandinavica, 96(6), 783-786.

    Nayyar, A., Saleem, M. I., Yilmaz, M., De Franco, M., Klein, G., Elmaliki, K. M., Kowalsky, E., Chatterjee, P. K., Xue, X., Viswanathan, R., Shih, A., Gregersen, P. K., & Metz, C. N. (2020). Menstrual Effluent Provides a Novel Diagnostic Window on the Pathogenesis of Endometriosis. Frontiers in Reproductive Health.

    Nnoaham, K. E., Hummelshoj, L., Webster, P., d’Hooghe, T., Nardone, F. de C., Nardone, C. de C., … Zondervan, K. T. (2011, June 30). Impact of endometriosis on quality of life and work productivity: a multicenter study across ten countries. Fertility and Sterility.

    Pavone, M. E., et al. "Endometriotic stromal cells express a molecular pattern consistent with decreased retinoid uptake, metabolism and action." Fertility and Sterility 92.3 (2009): S30.

    Pillarisetty LS, Mahdy H. Vaginal Hysterectomy. [Updated 2020 Aug 23]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2020 Jan-. Available from:

    Proctor, M., & Farquhar, C. (2006). Diagnosis and management of dysmenorrhoea. BMJ (Clinical research ed.), 332(7550), 1134–1138.

    Rafique, S., & Decherney, A. H. (2017). Medical Management of Endometriosis. Clinical obstetrics and gynecology, 60(3), 485–496.

    Rizk, B., Fischer, A. S., Lotfy, H. A., Turki, R., Zahed, H. A., Malik, R., Holliday, C. P., Glass, A., Fishel, H., Soliman, M. Y., & Herrera, D. (2014). Recurrence of endometriosis after hysterectomy. Facts, views & vision in ObGyn, 6(4), 219–227.

    Rochman, C. M., Kurobe, T., Flores, I., & Teh, S. J. (2014). Early warning signs of endocrine disruption in adult fish from the ingestion of polyethylene with and without sorbed chemical pollutants from the marine environment. Science of the Total Environment, 493, 656-661.

    Scialli, A. R. (2001). Tampons, dioxins, and endometriosis. Reproductive Toxicology, 15(3), 231-238.

    Shao, R., Cao, S., Wang, X., Feng, Y., & Billig, H. (2014). The elusive and controversial roles of estrogen and progesterone receptors in human endometriosis. American journal of translational research, 6(2), 104–113.

    Shim, J. Y., Laufer, M. R., & Grimstad, F. W. (2020). Dysmenorrhea and Endometriosis in Transgender Adolescents. Journal of Pediatric and Adolescent Gynecology.

    Shreya. “The Ecological Impact of Feminine Hygiene Products.” Technology and Operations Management, 4 Nov. 2016,

    Signorile, P. G., & Baldi, A. (2018). Looking for an effective and non-invasive diagnostic test for endometriosis: where are we?. Annals of translational medicine, 6(Suppl 2).

    Słopień, R., & Męczekalski, B. (2016). Aromatase inhibitors in the treatment of endometriosis. Przeglad menopauzalny = Menopause review, 15(1), 43–47.

    Weisberg, E., & Fraser, I. S. (2015). Contraception and endometriosis: challenges, efficacy, and therapeutic importance. Open access journal of contraception, 6, 105–115.

    Winkel, C. A. (2000). A cost-effective approach to the management of endometriosis. Current Opinion in Obstetrics and Gynecology,12(4),317-320

    Yager, P., Domingo, G. J., & Gerdes, J. (2008). Point-of-Care Diagnostics for Global Health. Annual Review of Biomedical Engineering, 10(1), 107–144.

    Yoon, J., & Chung, E. (2017). An investigation on Graphical Abstracts use in scholarly articles. International Journal of Information Management, 37(1, Part A), 1371–1379.

    Zanelotti, A., & Decherney, A. H. (2017). Surgery and Endometriosis. Clinical obstetrics and gynecology, 60(3), 477–484.