By Lindsey Walstrom-Edwards, Head of Partnerships of Antidote
& Kevin Lenaburg, Executive Director of CHAMP
My fifth-grade teacher, Mrs. Geison, commented, “It’s only been half the year and you’ve already missed 17 days of school. Why is that?” My response was “bad allergies,” although allergies did not explain stomachaches, cringing when the phone rang, or the blinding pain when light peeked through the blinds.
Years later, as I sat in the Coalition of Headache and Migraine Patients (CHAMP) meeting I learned these symptoms were not caused by allergies, but by migraine disease. I was one of the one in 20 children who suffer from migraine disorders.
According to the Migraine Research Foundation, migraine alone is the third most common illness in the world and is often cited as the sixth most disabling. With such a wide impact of the condition, it is a wonder that effective treatment options are few and far between.
But that’s changing.
Increasingly, medical researchers are testing new treatments to reduce the amount of time headache attacks last and also conducting studies to better understand headache and migraine disorders—why they happen, who gets them, and if there are genetic indicators that can tell us more about how to both treat and prevent their occurrence.
Do we really need more research?
Headache disorder treatments have certainly varied widely over time. Abulcasis (936–1013), surgeon to King Al-Hakam II of Spain, advised inserting garlic under the skin where the headache was located. Ali ibn Isa (ca. 940–1010 CE), an astronomer and physician, suggested tying a dead mole to the forehead as a remedy. Both of these are a far cry from the newly available Calcitonin Gene-Related Peptide (CGRP) receptor blockers. While many living with migraine are finding relief in these CGRP blockers, others report the drugs make their headache disease worse. There is more work to be done.
People living with cluster headache disease are often left with few treatment options outside of complementary and alternative medicine, which help some, but not all, find relief. On top of that, one in 20 children are living with headache disorders and these newer drugs have not yet been approved for their age group. Headache disorder patients need more treatments, and, by extension, headache disorder patients need more research.
Would you consider participating in a medical research study?
Patients who partake in medical research have access to quality medical care at leading health care centers, often at free or reduced cost. New offerings like free transportation for patients and home visits for routine lab work make it easier than ever for people to overcome the obstacles to participation. Finally, and most importantly, the next new treatment or cure is in a clinical trial today. People who partake in medical research gain access to these treatments early and, sometimes, are able to continue using the treatment as the drug or device goes through the approvals process.
How can you help?
As of December 2018, there were 174 headache- and migraine-related trials seeking a total of 44,139 volunteers. These trials range from observational trials designed to give scientists a better understanding of headache diseases and who they impact to studies aimed at identifying biomarker and gene relationships that may put individuals at higher risk for headache diseases. There are also clinical trials designed to test new drugs, devices, and complementary and alternative medicine options to treat or prevent headaches.
Each of these studies is helping to forward scientists’ understanding of headache and migraine disease and identify new ways to bring relief to people living with these conditions. Unfortunately, an estimated 80% of medical research studies are delayed or never get off the ground due to challenges recruiting individuals into the right trials. Without volunteers like you, eight out of 10 of these trials won’t get off the ground.
Fortunately, connecting with medical research is easy. The U.S. Pain Foundation has made it easy to look for clinical trial options by adding a search tool to its website at: uspainfoundation.org/find-clinical-trial
In less than 60 seconds, you can find out if someone with your demographics is eligible to participate in a research study nearby. We tried it out and were eligible for six and 13 studies respectively. Narrowing those down can take some research, but the benefits for yourself and the community could be worth it.
What should you know before participating in a trial?
Before you decide to partake in any clinical trial, it’s important to make sure the trial is the right fit for you. Ask lots of questions. Be sure to connect with your doctor to see if this trial would line up with your specific treatment plan. Then take time to speak with the researchers to understand exactly what will happen during the trial and what type of communication you can expect before, during, and after the study. You are not just a research subject; you are an active stakeholder with a vested interest in the outcome. Make sure you partner with a researcher who views and treats you the same way.
If you’re still having trouble deciding, think about if the research topic is something you care about. If you are interested in helping researchers understand what drives headache disorders, consider an observational or gene study. If finding new treatment options is a priority for you, consider a clinical trial. With almost 200 trials looking for volunteers, there is surely something out there for everyone.
Kevin Lenaburg is the Executive Director for CHAMP. He has 15 years of professional experience in health care advocacy and communications, and he has personal experience in the headache disease area as the caregiver for a loved one with disabling chronic migraine disease.
Lindsey Wahlstrom-Edwards is the Head of Partnerships for Antidote, a digital health company that aims to connect individuals with medical research to help accelerate the development of new treatment options. She has a master’s in public health from Columbia University.