An Intern’s Journey
When my summer internship with Red Nucleus began, I had little familiarity with rare diseases and the life science industry. A distant relative of mine struggled with ALS and I remember hearing about the slow, painful course of the disease and the toll it took on his body and loved ones. I was young when I heard about it, so I did not appreciate the many features of the ALS landscape – the treating clinicians, devoted caregivers, dedicated researchers, and others who devote their careers to improving the lives of people living with ALS. Then, the ALS Ice Bucket Challenge took off in the summer of 2014, and I participated at twelve years old. As I think back on my past perception of rare diseases at the end of my internship, I value that I have greatly expanded my knowledge and admiration for the rare disease community during my experience at Red Nucleus.
[Nearly a decade later…]While attending the DIA Conference and the Digital Biomarkers and Clinical Measures in Biology Summit this summer, I was able to develop an understanding of the tireless efforts being taken to make patients’ lives easier. Listening to people who live with ALS and other rare diseases at these conferences, I heard what the patients need, and it was powerful to learn about rare diseases from perspectives of people who live with them.
With a Marketing degree, I knew there would be many options for career paths I could take upon my college graduation. Jobs involving finance and accounting never really stuck out to me, and I always wanted to help people. This internship in the life science industry has influenced my future direction by helping me recognize the ability to use my education in Marketing to make a difference in the world. I want to feel good about the work I do, and I’m now aware of a myriad of opportunities to pursue such a path in life science.
I learned that treatments of promise are in development for rare diseases and, although they face significant barriers, tech innovation could be the key to delivering these therapeutic breakthroughs.
Electronic data capture has become increasingly important in clinical trials and medical practice in recent years. However, critical data can be lost if it is not collected precisely and accurately. The use of a singular platform to treat patients, record data, and access data repeatedly is becoming more important to ensure the security of patients and their data. Throughout my internship with Red Nucleus, I have come to learn about the difference the iTakeControl platform is making in clinical trials and in the lives of patients.
Problems: Accessibility, Privacy & Meaningful Assessments
Doctors who specialize in the rare disease space can often be located far from where their patients reside. Many of these patients with rare movement disorders have caretakers, and some have children or pets that cannot be left alone during travel for crucial appointments. As range of motion deteriorates over time in patients living with disorders such as ALS, ability to get to their doctor becomes an obstacle in the way of getting the care and medical attention they need.
When video capture solutions are implemented in medical physicals and clinical trial data, there is concern for the privacy of the patient or the person participating in the study. Although video data can be extremely helpful in reviewing details and offering care to patients in the comfort of their own homes, patients can feel uncomfortable having their face and data recorded in a personal space.
In rare disease research, there have been investigational treatments offered to patients in clinical trials with significant improvements in the lives of patients, but the orphan drug is not approved because the evidence recorded on paper fails to capture just how substantial the benefits are in ways that are meaningful to patients and their families. Without recorded video in clinical trials, there is no proof of the crucial physical progress made in movement disorders specifically.
How is Red Nucleus Addressing These Problems?
Recorded video data can be transformative in clinical trials. Recording of these appointments is the critical difference between the studies iTakeControl supports and clinical trials without visual data. As mentioned above, there have been many times where improvement in patients with certain movement disorders has been shown physically in patients but the evidence does not translate well onto paper. Video data can advocate for treatments like these when approval does not seem promising. With recorded video data, doctors and researchers can also go back and analyze the same study multiple times. The ability to review a video several times on the platform allows for small details and differences to be picked up on.
The implication of an application on cell phones improves the ease of recording data. This can reduce the patient’s overall hardships and expenses because they do not need to worry about childcare or pet care in their trips to appointments, rather they are only away from their children or pets for a small amount of time during the appointment. Especially in disorders and diseases that affect movement, progress data can still be accurately recorded in times where it may be most difficult to get to their clinician.
As I mentioned above, with video data capture, there is a risk of data security for the patient. The wellbeing of patients is the objective of clinical trials, which is why privacy is emphasized in the iTakeControl platform through facial recognition and blurring. On occasions when the patient moves fast or there may be a personal photo in the background of a recording, editors from Red Nucleus revise the video to ensure that blurring is consistent and effective. Patient privacy is strongly valued at Red Nucleus, and this blurring software is a proud component.
What I’ve Learned at Red Nucleus
My biggest takeaway from my experiences attending these conferences while working within Red Nucleus is that Patient Advocacy is crucial in discovery and development, especially in the rare disease space. Without patient advocacy, we cannot be fully aware of the experience people have while living with these rare diseases. In a space where we learn more every day, every detail we can gather, every fraction of a second it takes to walk six feet, is crucial to clinical research. The iTakeControl Platform addresses the importance of the patient’s experience and details by listening to the patient and recording more evidence of improvement than what can be recorded on paper.
Red Nucleus offers a critical solution for challenges we have faced for decades in rare disease research. By making it easier for patients and researchers, the work we do remains patient-focused with altruistic intent.
When I participated in the ALS Ice Bucket Challenge over a decade ago, I never anticipated its relevance to my personal career path. My summer at Red Nucleus has entirely altered my perception of rare diseases and the community that surrounds them. I have grown an immense appreciation for the rare disease community, and when someone in my world is diagnosed with ALS or a similar rare disease again, I will feel inspired by their journey from a new perspective.
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iTakeControl from Red Nucleus on Vimeo.
