Introduction

Through Human Practices, we aimed to ensure our project's relevance to the broader society and scientific community, as well as to evaluate its real-world effectiveness. We sought to accomplish this by reaching out to researchers, and patients suffering from endometriosis because their lived expertise and experience would enlighten our blind spots.


Our main goals within Human Practices were:

  • Raising awareness regarding endometriosis.

  • Educating the public about endometriosis and synthetic biology.

  • Collecting diverse opinions and inputs to improve our project.

With goals set in place, we needed to find questions that would bring us closer to them once answered.


Therefore, we asked ourselves:
What are the experiences of individuals living with endometriosis?

In what ways does endometriosis affect the daily lives and overall well-being of those diagnosed with the condition?

How can our project effectively address the needs of individuals living with endometriosis, and how can we ensure that our proposed solutions are relevant and beneficial to them?

What strategies can we implement to create a positive impact for individuals living with endometriosis, and how can their insights and experiences inform the development of our project to optimize its effectiveness?


To achieve our goals, we explored the concerns, stories, and insights of the women dealing with endometriosis through interviews, in collaboration with the Danish Endometriosis Association ‘Endometriose Fællesskabet’, who has more than 10.000 followers on their social media. Endometriose Fællesskabet works with raising awareness, spreading education, and hosting communal space for patients and their loved ones to share their experiences and tips on how to handle day to day life.

We also discussed our project with various experts. The first was Martin Rudnicki, Professor, and Doctor of Gynecology and Obstetrics at OUH, Director of Minimal Invasive Surgery, who has worked with and researched endometriosis. Lise-Lotte Hofmann Frisch, Head of Education at Nyborg Gymnasium, has worked as a high school biology and chemistry teacher. Judith Kuntsche, Lecturer at the Faculty of Physics, Chemistry, and Pharmacy, has researched the delivery of small molecules using lipid nanoparticles. Lasse Nielsen, Associate Professor, Philosophy, Faculty of Humanities SDU, has knowledge about scientific ethics helped us ensure that our continued work would follow ethical guidelines.


Timeline

Endometriose Fællesskabet

To create the best treatment for endometriosis, it was essential to gain a deeper understanding of how the disease affects not only the daily lives of women but also the mental tax it has on patients. As a result, we initiated a collaboration with Endometriose Fællesskabet.

In collaboration with them, two posts were created for their social media accounts: the first aimed at interviewing members dealing with endometriosis to better understand how endometriosis impacts their lives, and the second focused on collecting responses for our survey.

Post 1: Collecting interviews

The first post, which can be seen in Figure 1, was created to ask endometriosis patients for interviews. These interviews were very important to us, as we believed that the experiences and voices of patients should play a key role in our project. After all, what good is a treatment that no one would use?

The post was an immense success, as we received numerous responses from women eager to participate in our interviews and share their stories. Due to time constraints and workload, it was ultimately decided to interview eight women, and we expressed our deepest gratitude to all others who reached out.

All eight interviews were conducted, and we learned a lot about the daily lives of those suffering from endometriosis. One thing that had a great impact on us was the shared experience of patients not having anyone believe in them, many had experienced others dismissing their symptoms leading to a degradation of their self-image. The details of each interview are described under patient interviews.

Placeholder Image
Figure 1: The first post on ‘Endometriose Fællesskabet’s Instagram and Facebook

Description:

🌸 Are you part of the Endometriosis community? We would love to hear your story! 🌸

We are a passionate iGEM team from the University of Southern Denmark in Odense, working on developing a non-invasive, non-hormonal treatment for endometriosis. To create a solution that truly makes a difference, we need your help.

We are looking for women with endometriosis who are willing to share their experiences and challenges with us. Your input will help us better understand the needs, raise awareness about the topic, and tailor our research based on your experiences.

📅 Are you interested in participating in an interview?

📩 Send us a DM at @igem.sdu or write to igem@sdu.dk for more information.

Let us work together towards a better future without discomfort and limitations. 💪✨

Post 2: Survey


The second post, as can be seen in Figure 2, was created to spread a survey that we had created. Our goals for the survey were:

  • Gauging patients’ experience regarding diagnosis and treatment.

  • Acquiring quantitative data, such as the age at which they were diagnosed.

  • Understanding whether the patients would be open to accepting our proposed treatment.


In total, the survey received 240 responses providing us with valuable insights that will significantly contribute to our research and enhance our understanding of the needs and experiences of those affected by endometriosis.

Placeholder Image
Figure 2: The original version of the second post. A translated version can be found below.

Translation:

Hello, amazing people!

We are a dedicated iGEM team from the University of Southern Denmark in Odense, and we are working on developing a non-invasive and non-hormonal treatment for endometriosis. We need your help to create a solution that can truly make a difference.

We have created a survey that takes only 5 minutes to complete and is entirely anonymous. By sharing your personal experiences and input, you help us raise awareness about endometriosis and improve future treatment options.

Click the link below to participate in the survey and help shape the future of treatment! Your voice means everything to us 🌸

Survey: https://forms.office.com/e/eH36zfDKbA

We greatly appreciate your participation and support!

Best regards,

Pelle, Tobias, and Susan from the University of Southern Denmark

Survey results

Placeholder Image
Figure 3: Graph depicting respondents answers to the queation “How has your experience with the healthcare system been in relation to the diagnosis of the disease?” scored from 1 (very poor) to 5 (very good).
Placeholder Image
Figure 4: Graph depicting respondents’ answers to the question “How has your experience with the healthcare system been in relation to the treatment of the disease?” scored from 1 (very poor) to 5 (very good).
Placeholder Image
Figure 5: Graph depicting respondents’ answers to the question “What kinds of treatment have you received?”
Placeholder Image
Figure 6: Graph depicting respondents’ answers to the question “Do you think there is a need for a more effective treatment option for endometriosis?”
Placeholder Image
Figure 7: Graph depicting respondents’ answers to how many symptoms they would be willing to accept when receiving our treatment as described.
Placeholder Image
Figure 8: Graph depicting respondents’ answers to the question “At what age did you first learn/hear about Endometriosis?”
Placeholder Image
Figure 9: Graph depicting respondents’ answers to the question “In which age group do you think youth/adults should be informed about endometriosis?”
Placeholder Image
Figure 10: Graph depicting respondents’ answers to the question “How many times have you experienced the disease recurring after treatment?”



Survey reflection

As can be seen in the graphs above. Our survey revealed that approximately 68% of patients diagnosed with endometriosis didn’t know about the disease before the age of 22 with only 1,6% of the patients believing that the public should know about the disease after the age of 21 this disparity was an area in which we needed to place our focus.

As a response, we created a flyer centered around endometriosis. This flyer was addressed to parents of young children who might have endometriosis. We also prepared educational material for primary and high school students, as can be seen on the education page

Additionally, the survey highlighted a high recurrence rate of the disease, with 84% of respondents reporting experiencing recurrence at least once. Many patients expressed dissatisfaction with their current treatment options, underscoring the need for more effective solutions. Encouragingly, 96% of respondents indicated a willingness to consider our treatment as described in question 6, depending on its symptoms, suggesting a positive reception to technologically advanced treatments, particularly when side effects are rare or mild.

Patient Interviews

Why did we want to interview patients?

Our objective in interviewing patients suffering from endometriosis was multifaceted. We aimed to gain a deeper understanding of what it is like to live with the disease and how current treatment options are perceived. Additionally, we sought initial thoughts on various treatments, including our own, which utilize synthetic biology. We also aimed to gather insights on how and when information about the disease could be taught to enhance awareness and address any related considerations.

Five of the eight interviews have been documented, as those participants consented to be recorded, either via video and audio or audio only. The remaining three participants declined to have their interviews recorded. Quotes from the documented interviews can be found throughout the page.

Patient 1

Pain Perception, Treatment Challenges, and the Need for Awareness

  • Menstrual pain resulting from endometriosis, even when severe, is often perceived as normal, leading many individuals to rely on painkillers early on. The disease affects every aspect of life for those affected – not just physically, but also mentally, emotionally, and socially.

  • Hormonal treatments, such as IUDs, can cause serious side effects, including constant pain, drowsiness, and permanent tinnitus, which may impact patients' willingness to trust new treatments.

  • There is a need for clear, honest education about the disease, with an emphasis on targeting a younger audience, around 14 years old, to promote better awareness.

Citation mark up

The most important thing is actually finding someone
who believes what you're saying.
That they believe you.

Citation mark down

Patient 2

Support, Side Effects, and Seeking Help

  • Patients may encounter dismissive comments from healthcare professionals, with some being told they are overreacting, or that hormonal treatment is the only option.

  • A significant challenge for patients is the feeling of being disbelieved and unsupported, especially when they are provided with no tools to manage the emotional, social, and mental impacts of the disease.

  • Side effects affecting fertility may deter some patients from accepting our treatment. Additionally, the patient shared a useful guideline for knowing when to seek help: "If regular painkillers do not help, see a doctor."

Citation mark up

One’s fundamental trust in other people is shaken.

Citation mark down

Patient 3

Adapting to Endometriosis through Career Planning, Dietary Adjustments, and Treatment Choices

  • Some individuals manage their careers successfully, despite severe pain, by planning around their menstrual cycles.

  • Dietary changes, such as eliminating gluten and sugar, can significantly alleviate symptoms for certain individuals.

  • Willingness to accept treatment side effects often depends on personal circumstances, with those experiencing severe pain being more likely to explore multiple options.

  • Additionally, it is crucial to educate young people about endometriosis in a way that informs them without causing unnecessary fear.

Citation mark up

Every time I sat down on a chair,
it felt like a knife was being stabbed into my lower abdomen.

Citation mark down

Patient 4

Treatment Limitations, Psychological Effects, and Parental Awareness

  • Hormonal treatments can effectively manage endometriosis, but symptoms often resurface when treatment is paused, particularly during attempts to conceive.

  • The disease can have profound psychological effects, including emotional distress, disrupted life plans, and a sense of lost purpose.

  • Patients frequently face the challenge of consulting multiple doctors who may not fully understand their situation.

  • Educating parents about the disease could increase awareness and enable them to better support their children.

Citation mark up

Nobody has pain this bad, you're just being dramatic.
You need to pull yourself together.

Citation mark down

Patient 5

Complexities in Care, Hormonal Impacts, and the Need for More Options

  • Hospitals face challenges in providing effective care for patients when they struggle to identify the underlying issue, complicating treatment for patients.

  • Hormonal treatments can cause side effects such as anxiety, and recovery after surgery can be a lengthy process.

  • Excessive use of painkillers may lead to stomach and esophagus issues. Patients would appreciate more treatment options to better manage side effects and make informed decisions.

Citation mark up

It simply can’t be that we can’t do more.

Citation mark down


Reflections on our interviews

Through our interviews, we found that the social, emotional, and mental impacts of endometriosis were much greater than we had first anticipated. Patients had seen their social lives slowly decay despite planning around their menstrual cycles due to the uncertainty of how much pain each day would bring. Many patients had lived through extended periods of mental stress, where the lack of acknowledgment of their pain led them to feel isolated and alone. Additionally, the emotional tax of many patients could not be understated, some fell into great emotional turmoil when they had trouble conceiving, feeling like their identity and life plan was slipping through their fingers.

Thanks to the patients who reached out to us, we achieved a better understanding of the problems affecting their daily lives. They also enlightened us about all of the side effects – especially those affecting fertility - that may influence who is willing to accept our treatment. Furthermore, we recognize the importance of educating young people, both boys and girls, about the disease without instilling fear and informing parents so they can offer better support to their children.

Expert Interviews

Our work with expert interviews:

Martin Rudnicki

Professor and Doctor in Gynecology and Obstetrics at OUH, Director of Minimal Invasive Surgery

Why did we contact Martin Rudnicki?

We contacted Martin Rudnicki due to his expertise as a local professor and specialist in endometriosis. Our goal was to gain a deeper understanding of the disease and its current treatment options in Denmark. Additionally, we sought his feedback on our receptor choices and aimed to identify other potential targets. We wanted to explore whether there are changes in both the Endometrium and the Endometriotic lesions in patients with endometriosis.

What did we learn?

  • Endometriosis is a challenging disease to diagnose and treat. Currently, the main treatment options are limited to hormonal therapy and surgery. He emphasized that “all surgical treatments are rough treatments”, with a significant risk of side effects.

  • Progesterone receptors could be another potential target for our plasmids, as their intracellular concentrations in endometriosis cells have been more extensively researched.

  • The severity of a patient’s pain does not necessarily correlate with the number of visible Endometriotic lesions; instead, it often depends on the location of the lesions.

  • There could be changes in receptor counts both in the endometrium and the lesions themselves in women suffering from endometriosis. However, mapping these differences is complex due to the natural fluctuations in a woman's hormonal cycle.


Reflection

Following the interview, we reflected on our choice of target receptors, and how we might further investigate different receptor concentrations - such as progesterone receptors - more thoroughly. This train of thought led us to research and design a second treatment plasmid using the lack of progesterone receptor B in endometrial cells as a secondary safety factor.


Judith Kuntsche

Lecturer at the Faculty of Physics, Chemistry, and Pharmacy

Why did we contact Judith Kuntsche?

As we explored the future direction of our project, we had questions regarding the safest and most precise method of administering plasmids to patients. We also wanted to understand potential challenges related to in vivo plasmid administration. With Judith's expertise as a pharmacist and her research on transferring small molecules via lipid formulations, we hoped she could provide valuable insights and help address some of the questions we had.

What did we learn?

  • Lipid nanoparticles are currently the best choice for non-viral vectors due to their stability, market availability, and extensive research.

  • It would be important to develop methods for lipid nanoparticles to actively target endometriosis cells and administer them as locally as possible.

  • The mucus produced by the Endometrium may pose a challenge for lipid nanoparticles to effectively penetrate


Reflection

We now have a better understanding of the challenges involved in delivering plasmids to cells. To address this, we need to design a stable lipid nanoparticle (LNP) capable of protecting the plasmid while selectively targeting the desired cells for delivery. Local administration of the LNPs will be necessary to minimize systemic side effects. However, with further research, these challenges could be resolved, allowing for safe and precise treatment delivery.

Placeholder Image

Lasse Nielsen

Associate Professor, Philosophy, Faculty of Humanities SDU.

Why did we contact Lasse Nielsen?

Early in the project, we recognized that representing a vocal minority would require thoughtful and responsible handling. We also wanted to conduct a bioethical analysis to ensure that our research would contribute positively to the future. Lasse Nielsen’s expertise in bioethics made him an ideal advisor for these aspects.

What did we learn?

  • It is crucial to recognize that any research project shapes future possibilities, with Lasse emphasizing the importance of considering "what avalanche you are setting in motion.".

  • Few ethical concerns were identified with our solution, as it does not involve gene modifications and closely aligns with existing medical approaches.

  • The overall benefit for the patients is the key factor, where despite some negative effects, the positive outcomes of the treatment outweigh the risks.


Reflection

Our discussions with Lasse Nielsen reassured us that we had made appropriate ethical considerations regarding the patients. However, he recommended placing more emphasis on ethical analysis, particularly within the realm of scientific ethics. The most crucial point raised was the need to communicate potential side effects clearly, allowing women to make informed choices about their bodies.

Placeholder Image

Lise-Lotte Hofmann Frisch

Head of education at Nyborg Gymnasium.

Why did we contact Lise-Lotte Frisch?

Lise-Lotte Frisch was consulted for her experience in creating educational material tailored to our targeted age group. She was chosen due to her background of being a former biology and chemistry teacher at Midtfyns Gymnasium, where she had success in motivating students to pursue further studies by participating in competitions like the Drughunters, hosted by the Danish medicinal company Lundbeck.

What did we learn?

  • The first piece of advice was to clarify why the students should care about the material being taught. Addressing this question would make them more receptive to learning.

  • Communication with the teachers to assess the students' prior knowledge was highlighted as essential for adapting the content.

  • Emphasis was placed on the importance of using diverse teaching methods and encouraging students to visualize and share their understanding with peers.

Reflections:

Following our meeting with Lise-Lotte Frisch, we dedicated significant time to considering how to effectively engage students across different age groups and interests. Her positive feedback on using the 5E teaching model led to its continued use in our educational material. Considerable thought was given to how to effectively convey the importance of the subject to spark student interest, and additional input from a high school teacher ensured alignment with the curriculum.


Placeholder Image

Knud Engbjerg

Business developer at SDU RIO

Why did we contact Knud Engbjerg?

Knud Engbjerg was approached because the team recognized a lack of experience in starting a business. He was recommended by our supervisors who had previously collaborated with him on a startup project.

What did we learn?

  • Engbjerg suggested several funding opportunities that could be pursued after iGEM.

  • He also advised reaching out to Liv Thomsen for guidance on how much information about the treatment could be shared on our wiki.

Reflections:

After we met with Knud Engbjerg, the team considered the best approach to present our business plan and initiated contact with Liv Thomsen.


Placeholder Image

Liv Thomsen

Specialist Consultant at SDU RIO

Why did we contact Liv Thomsen?

Liv Thomsen was contacted to gain insight into the requirements for applying for a patent.

What did we learn?

  • Thomsen explained that pursuing a patent for our current plasmid would prevent participation in the iGEM competition. However, if the team was willing to take the risk, it could be added to the wiki given the plasmid would be optimized later.

Reflections:

Following the meeting, the decision was made to move forward with participation in iGEM, focusing on optimizing the plasmid design and potentially altering or replacing certain components in the future.


Placeholder Image

Conclusion


Our primary goals within Human Practices were to make a positive impact on our local community by raising awareness and educating the public about endometriosis and synthetic biology. Additionally, we wanted to shape our project based on insights from patients and experts, to improve upon both our treatment design and educational materials.

Our collaboration with Endometriose Fælleskabet connected us with several endometriosis patients, allowing us to collect valuable data through a survey. This survey helped us understand key challenges related to endometriosis, such as delayed diagnosis, inadequate treatment options, and the need for better education and awareness, especially for young people. Through individual interviews with patients, we learned the importance of not creating fear when teaching youth about endometriosis, and that educating parents could help lessen the burden on young individuals. These insights informed the development of our flyer, designed to educate both youth and their parents about endometriosis and guide them on when to seek help. This flyer was distributed during a visit by a local middle school to SDU. Similar considerations guided our outreach to a local high school, where we created educational materials on endometriosis and synthetic biology. We also received direct feedback on how to approach teaching from Lise-Lotte Frisch, director of education at a local high school.

Patient interviews also revealed that certain symptoms, such as those related to fertility, might discourage some patients from accepting treatment. This insight made us aware that we may need to adjust our plasmid design in the future to account for specific symptoms. Additionally, our interview with Dr. Martin Rudnicki, a physician and professor, highlighted the potential to target progesterone receptors, which led us to develop an alternative plasmid design and explore potential future design combinations. Interviews with other experts, such as Lasse Nielsen and Judith Kuntsche, provided further guidance on ethical considerations and plasmid delivery methods for the future.

Overall, our work in Human Practices allowed us to positively influence our local community through the development of educational materials and by raising awareness about endometriosis and synthetic biology. Our project was significantly shaped by the input of local women affected by endometriosis, as well as experts, which influenced both our educational initiatives and treatment design.