DCRI Pediatrics and iCAN Anthology | Volume 1

nthology ICAN&DCRI

VOLUME 1

REFLECTIONS ON PEDIATRIC CLINICAL RESEARCH

I)

II) WRITTEN WORD

Clinical research helps protect people that were previously untreatable. It improves treatment that could be better. It preserves life and quality of life."

GREGORY KOSTUR, MD

1

VISUAL ARTS

GARY GERLACHER, MD, MBA

“Research allows doctors to know the best way to treat your problems.”

“I am allergic to dogs. But I get allergy shots. They help me be not allergic to dogs anymore. I was allergic to dog’s saliva which is their lick. I am not allergic to dogs anymore. But if I do not take them (allergy shots), I will be allergic again. And that is why I take them.“

Grace is an 11 year old girl who was born at just 32 weeks. As an infant, Grace spent a month and a half in the Elliot NICU in Manchester, New Hampshire. Her drawing represents her neonatal time of life, in which the medical care and treatment helped to save her life. Today, Grace enjoys participating in sharing her voice and helping to support her community of doctors and researchers, and also families and babies through her artistic drawings. Grace hopes everyone can be inspired to help others.

Throughout her childhood, Valeria has participated in many clinical research trials. Valeria has a first-hand understanding of what it means to be a young patient and hopes that by sharing her experiences, other kids will be able to learn from her. Valeria’s own goal is to make clinical research trials accessible to all kids from anywhere.

Mitali has been a big supporter of kids living with medical conditions her entire life. One day, Mitali hopes to support all kids as a pediatric medicine doctor. As a future pediatrician, Mitali is focusing on the needs of the whole patient to ensure that kids are both mentally and physically healthy.

“The painting aims to express the Light and Hope that comes from clinical research; On the left, a researcher is painted in a dark background which represents the disease and the unknown. On the right, the colors become lighter and brighter, and there is a family with their child, full of happiness and hope because of the new effective and safe treatments. Mountains symbolize the state of a long and healthy life.”

Olivia is a student studying Biology and Public Health. As a young patient and an advocate, Olivia knows that all facets of science, medicine, research, innovation and technology must be patient centered. Without understanding patients' needs, nothing will work.

“This is what I think research and medical trials do, they build a bridge between doctors and parents/families/ kids to help with the scary stuff and help make kids healthier and better. It is the connection that brings us together.”

Painting & Cross Stitch

“Pediatric research is hugely important, because children’s bodies obviously aren’t the same as adult models when it comes to treatments. The majority of clinical research focuses on the adult body which is how HeLa cells came about, but the knowledge gained from them led to insights into every facet of cancer research. Children are honest and resilient just like the heart and most importantly when you think of children, you normally think of them as pure of heart.”

“My entry is an illustration of me wearing a mask, symbolizing how kids were strong throughout the entire pandemic.

If I could go back in time and tell myself what I know now about research, I would say that it will get better because of researchers who developed the vaccine and treatments for COVID.”

iCAN chapter: KIDS Central Ohio

“The digital painting depicts a woman curled around a white sphere. The sphere is in the exact center of the composition with all other elements surrounding it. It has two meanings that intertwine together: “the disease and the spring”. The first reading of the piece is that of disease, an illness that defines one’s life - every other aspect revolving around and bowing down to it. This depicts my initial feelings on hearing the diagnosis. The second reading is a more positive outlook: the spring.” Water wells from the white sphere, from that diagnosis, and pours out of it creating new streams of hope, creativity, and personal development. I am stronger in spite of the diagnosis, it is my hope that my life moving forward will be like that of the spring, and that people who look at this piece know that there is a much wider community supporting them and their own journey’s.”

I want to learn more about clinical research because my mom is sick. If more research gets done, we can find new and better cures for people like my mom!

iCAN chapter: Youth Council

My depiction of mental illness and struggling to come to terms with emotions. I used to believe the medical field was only about anatomy and physiology but as I explored psychological and mental illness and their connection with physical symptoms I learned over time—and through experiences—that the two are equally important and valuable aspects of healthcare. Now I’m very passionate about learning about psychology and incorporating it into my art, and if I could go back in time I would tell myself to explore the field earlier!

Scars can be beautiful too.

I felt strange when I first heard that what doctors do is called a practice, but my opinion changed over time as I started going for my pediatric annual checkups. I realized that practicing medicine requires doctors not only to stay focused to learn it as a science, but also the way the pediatric doctors and nurses communicate and interact with kids to diagnose and provide treatment is a unique form of art that they need to master. This combination of art and science changes the kid's experience at the pediatric office from being scared when we enter the doctor's office to a smiling face when we leave with a candy and a sticker, even after we got a shot or two.

What I drew shows how a family is happy because of all the work that doctors and scientists did to help achieve their child’s better well-being. They are very grateful for all the research that took place and all of the innovations that were created. I would go back in time and give myself this drawing to show how happy doctors make people. They sacrifice many things to help others feel much better. I feel very grateful towards them and everyone who contributed to these modern-day inventions that help us.

You are not defined by your illness, but by the amazing person that you are.

You are not identified by your struggles, but by how you approach them.

You are not what is not working well in your mind or body, but you are what you already are - a unique, resilient and precious diamond that always shines bright both from within and outside.

Remember that imperfections are a measurement only for diamonds, not for pebbles.

I have a mom and baby stuffed penguin. I always sleep along with them. When I feel lonely I share my feelings with them. I always take them with us wherever I go. Once I forgot them in hotel and came back to home. When I went on bed, I realized that we forgot them in hotel. My dad told me that he is going to buy new once but I cried a lot and didn’t sleep for entire night and by next day morning I got sick with high fever . My dad tried to get the same once in local stores, but he couldn’t find them. Next day my dad called to hotel and enquired about them and asked them to courier us. Once I receive them, I play with them then I feel much happy and my fever was gone by next day.

This piece of art shows my heart in a hospital bed. I put little cracks in the heart because my heart actually had little "cracks" (the messed up heartbeats).

The pandemic years have shown us the value of life and so much more. We masked up to fight the virus together. One thing that stands out is how many people who had immunity issues suffered because of covid. So my take away from the experience we all had is that we need to take good care of our health and ensure we maintain a healthy diet. Build our immunity stronger everyday because health is wealth. The girl in the mask represents a warrior fighting the corona virus, and the graffiti in the back represents the unhappiness of society due to the virus. The dark background represents the empty streets and quarantine.

The eye is the window to the soul. It holds the key aspects of emotions and the characteristics of oneself. Some people donate their eyes so that others can have the opportunity to see the beautiful colors of the world. The eyes are a blessing to one, and let us see the beauty around us. The eye is a universe itself.

This drawing improved my concentration and I got the stability and focus on the things whatever I do. Much improvement in my behavior and thought process.

Walking through the pediatrics hallway, a nurse hears the cry of a kid and rushes to the bed to assist the young child. Day in and day out, pediatric nurses come to a child’s rescue to ensure that the child is as happy and comfortable as possible. While they express happiness to the child, it may not be reflected in their mind. Nursing takes a large toll on the mental state of the individual behind the mask. Making the journey as best as possible for their patient is a nurse’s job, but they must also take care of themselves. The strength of a nurse comes from their will to stay positive while taking care of patients. My art shows a real-life superhero that I aspire to be a nurse.

WRITTEN WORD

KOLALEH ESKANDANIAN, PHD, MBA, PMP

“Research is important because it helps us add to the body of knowledge about pediatric disease and etiology.”

Research is a concept with such a broad meaning, yet I’ve spent years trying to pinpoint a definition for it. However, research never has one correct answer, nor is the answer ever permanent. Our world is continuously changing, and research aligns with the change. The explanations about cancer 100 years ago are not the same today. Moreover, 100 years from now, the information will not be identical. Although this may seem like a straightforward understanding, it was something that took me years to accept and learn that it is ok not to have the answers instantly. In second grade, I first interacted with the term “research” in a library. We were given our first assignment to investigate a question on the school’s new iPads. The question presented was simple with a direct answer to follow; my question was, “what year did Nebraska become a State?” I quickly typed the question into the Safari browser, with a couple of mistypes, and received the answer “1867”. There were no follow-up questions like why Nebraska became a State or its founders. This forthright approach made me relate research to math—one answer to the problem. However, research is not like a math problem with exactly one solution, and every other choice is incorrect; research is a never-ending question with multiple answers to support it. Nevertheless, in second grade, my brain was not pushed to learn an in-depth understanding of the topic; therefore, this realization didn’t click.

Soon after, I encountered another research project in middle school. We were instructed to research an endangered animal and learn why they were threatened along with simple facts about the animal. Although this project extended my research knowledge, I still did not comprehend that research is not a one-answer street. Research is about exploring a specific topic and acquiring knowledge about the issue in all different dimensions, so you are well informed while still being open to adding new information in the upcoming years. Further, my first years in high school broadened my perspective on the research concept. It started, with, once again, a research project. This time, my task was centered on how genes define us. I found several books, websites, and articles that would help me navigate this project. But as I was gathering information, I was instantly overwhelmed with the knowledge thrown at me. I would read a paragraph and write down the answer to my research project and move on to read the second paragraph, revealing a new solution. I was so confused and startled that all of this information could relate to one topic. Furthermore, some of the data has not even been discovered yet! I felt like I was swimming in a pool of information, trying to find the correct answer to the research question. That is when I acknowledged that research is not simple. Research is not supposed to be an easy-to-find question but more like finding a needle in a haystack. Research cannot be completed in one day; it is over a long time because you are slowly collecting data. Similarly, it entailed understanding the connection of points in the research, reasons why this information could be critical, and solutions to improve a situation or treatment.

Lastly, understanding the behind-the-scenes of research in the medical field is critical. Doctors, professors, and scientists are constantly discovering new answers to unknown questions about diseases so they can develop treatments to help their patients. When you go into the situation with an open mind and realize it may take weeks, months, and years to find the solution, it will benefit you. In addition, you will be able to communicate more clearly and effectively with your patients. If one of your patients has a rare or unknown disease, you need to be able to communicate with your patient that there are not many details linked with your illness and that research is going on to find answers. The patient may not understand why the doctor does not have answers and will feel frustrated. As a doctor, you need to know where they are coming from and explain that research takes time and the answers will be known, but in an unknown time frame. All in all, researching a topic is not finding one solution like a math problem. It is not like an English assignment where you read and write a summary of what you comprehend; it is a different type of learning - one that takes time and patience to understand that you will never know every single fact about the subject. It is more about falling in love with the process of learning the subject, comprehending the information you just read, creating solutions to help improve methods/situations, teaching the information you discovered to your community, and consistently gaining knowledge on the topic every day!

Mom

And Dad

Flower in a vase

Filled with murky water

Sits in solitude

By the bed of Sorrow.

Gardens watered By the tears of my mother.

Grass grown

By the work of my father. Sorrow.

A flower intoxicated

By the medicine of shaman

Infected by his own body

Cells against cells. Sorrow. A father drives silently on I-49

Knowledge Is a Book in Progress - Research is the Author

“Czy mówisz po polsku?”, she asked when I had just finished untacking my horse. “Tak, mówię po polsku”, I responded. During my horseback riding lesson I noticed that my fellow horseback rider was speaking Polish to her husband. I made a note of it, being Polish myself, and went up to her after the lesson to say hello. The fellow horseback rider turned out to be an accomplished Polish researcher working at a prestigious university lab in my hometown. Fast forward a few months, and I ended up spending the summer before my junior year of high school helping her at the lab. It was my first, at the time, recognized exposure to research. I assisted in research on gene regulatory networks that influence cardiac embryonic development; a segment of science in which there is a lot to wonder and want to know about. I spent my days running PCR’s, loading gels, isolating RNA, running ECGs on mice, clipping and tagging mice, dissecting mice for tissue samples, and trying to understand complex biological terms. I learned, partly because I returned to assist at the lab during the school year, that research takes time, and because research is driven by the mystery and art of human life, it is often pursued diligently, over years.

As I said, working at the lab was my first recognized exposure to research, but research is done at all stages of one’s life. Research, in its basic form, is human nature. Research is acting upon curiosities to learn more about life’s wonders. Curiosity manifests itself in people of all ages in many different disciplines. Curiosities motivate and fuel research, whether that research be conducted on the playground by a child, at school by a student, or at a lab by a professional. What is more beautiful and confusing than life and the truth? Pursuing, questioning, and investigating life and truth, researching, is something that people do. Poets, artists, teachers, priests, and researchers all pursue the understanding of life and the truth in their own respective ways. A sculptor has a stone and chisel; researchers have a laboratory and equipment. There is a shared beauty in both sculptures and science. I have never conducted pediatric clinical research. My work at the lab is bench work research, a cousin of clinical research. But my experiences have taught me that research takes time, and to get to a point where pediatric research is clinical means that countless hours, sets of eyes, thoughts, and improvements have contributed to a point where a treatment has been deemed enough to be tested with the most precious of life: children.

By writing this essay I am speaking on medical research and my experience with it. I am able to do so due to the fact that I have been lucky enough to come in contact with opportunities that cultivated my interest in medicine and research. Not all students have opportunities to get involved in research or participate in science related extracurriculars. In realization of this fact, I decided to host science seminars at a local after school program benefiting students from under-resourced communities. All researchers were once children. At some point in time something – a person, opportunity, experience– inspired them to pursue research. Who knows if any of my seminars’ participants will become researchers…. Just like who knows what would have happened if I had not said hello to my fellow horseback rider….

Fostering Hope

Within a complicated diagnosis, there is little that can be controlled. The diagnosed medical condition dictates the pattern of the family schedule.

Wake up, manage condition, take medicine, eat breakfast, monitor for side effects, go to school, talk to school nurse, manage condition, take medicine, eat a snack, have physical education, manage condition, take medicine, eat lunch, manage condition, pay attention in class or at work, manage condition, take medicine, eat a snack, do homework, manage condition, take medicine, eat dinner, manage condition, take medicine, go to bed, manage condition overnight, take medicine… and wake up to do it all over again.

The blissful freedoms of making carefree everyday decisions are often lost, at least, until there is a treatment… or a treatment leading to a cure. This is where ‘hope’ becomes the most powerful medicine of all. And best of all, hope can be fostered through the support of clinical research trials.

Participating in clinical a clinical research trial offers families the opportunity to empower themselves to act in support of future learnings. Through their participation, a family has the ability to take control by fostering the hope of what is yet to come, and to believe that their efforts in choosing to participate in a clinical research trial, has the power to make life better, which ultimately it does. Hope can infinitely provide a reminder of how much we matter, and together, how we can collectively work to achieve a greater good, possibly even a cure.

Dad’s Haiku

Was strong, confident

My kid sick and world crashes

Never giving up

A Different Point of View

I don’t fear the future. I know that each day can bring about a new set of gifts such as the warmest sunshine I have ever felt, a perfectly made frozen coffee, a kiss from a new puppy or even, a gentle needle poke – because yes, that is sometimes the best possible part of a day when you live with an autoimmune condition like I do.

What I do often think about is how I can encourage others to feel the same type of positivity. I recently finished my last pediatric specialty care appointment as I am now 21 years old and within my group transition to adult appointment, it was asked of all of us to share a word that best describes how we feel about our condition. As the answers came forth, other young people shared, “Burden”, “Horrible”, and “I hate it and can’t just describe that in one word”, all I could think about was that it really wasn’t that bad. There are a lot of gifts that I have received through having my medical condition. I have made new friends, traveled to speak about my condition, and even chosen my college degree in part, due to my medical condition.

After a few minutes, it was my turn and I shared the word that I thought best suited my own thoughts and I said, “Responsible”. My condition hasn’t held me back, but instead has allowed me to grow up in a world in which I appreciate all that I have. Sure, I may have grown up faster, but I savored each moment of this life. I have no regrets about living with my condition as I accept it as a unique part of myself. I am no greater, but I am also no worse in being who I am. I instead see the opportunity in which I can do many wonderful things to help my community.

I may not have changed anyone’s viewpoint that day, but I might have planted a seed in which to encourage a different point-of-view. Sometimes, that is all that is needed.

Andy rushed downstairs, put on his shoes, and hopped on the bus. His teacher was late as usual, and later announced that they had an essay. The whole class frowned and Andy looked around and let out a little smirk. “For this essay, you will be tasked with answering the question, ‘If you could go back in time and tell yourself about your medical experiences, what would you say?” He already knew what to write. When he was 7, he was diagnosed with severe asthma. His regular therapies weren’t working well, so, he had to get surgery. That night, he brushed his teeth and tucked himself into bed. He closed his eyes and suddenly, he was in his bedroom, but, it wasn’t how it was now. There weren’t any sports posters or anything. There were toys that he hadn’t seen in years. Someone opened the door and walked into the room. Andy was in awe. It was him, but younger. He looked at the calendar next to the bed. It was the week before he had to get surgery for his asthma. Andy’s younger self came into the room in tears. Andy remembered this. He was so scared to get surgery and he didn’t want to. He felt bad and tried to cheer himself up with a joke. He then said, “Don’t worry, everything is going to be ok. Everyone around you is going to keep supporting you. Don’t ever give up, and a piece of advice, don’t ask what they are doing to you because you won’t understand it and it’s probably gross anyway.” His younger self couldn’t help but chuckle. Andy smiled and calmly woke up, realizing it was all a dream.

KOLALEH ESKANDANIAN, PHD, MBA, PMP

3

MIXED MEDIA

“Research in pediatrics furthers our knowledge and gives us cutting edge information to help children.”

Cooper is a high school senior with a keen interest in engineering, science, mathematics, and especially medicine. Growing up with a mom that works in the field of pediatric clinical research, Cooper understood the challenges that children and young people often face when diagnosed with rare and complicated medical conditions. Using this insight, his expression of hope for patients is displayed in his artful jewelry design. The stone identifies the child while the sterling silver overlay is a reflection of the care of scientists, doctors, researchers, and family. Cooper’s design shows the deep strength and gentle support of the patient as they pursue treatments for not just themselves, but all children around the world.

icanresearch.org

dcri.org/our-work/therapeutic-expertise/pediatrics

The Duke Clinical Research (DCRI) pediatrics faculty ensures that the safety and well-being of children is at the center of every step of pediatric clinical research. Along with our statisticians, site and data management experts, and project leaders, our faculty work closely with sponsors, and establish strategic partnerships with groups such as the International Children's Advisory Network (iCAN) to ensure accurate and efficient study delivery.