How To Get Involved In Migraine Research at Every Level
The COVID pandemic has shed light on the importance of medical research more so than ever before. Earlier this year, you could hardly turn on the news without hearing about clinical trials and FDA approvals. As we all know, though, medical research for diseases doesn’t advance quite at the rate it did for the COVID vaccine.
Research developments typically take many years and sometimes hundreds of thousands of dollars. A lot needs to happen to make it all come together. The fact of the matter is that research advancements, including the release of new treatment options, would not be possible without patient participation.
Patients can offer endless unique insights to researchers. Can you name your most bothersome symptom? Can you report on how effective a treatment is after taking it? Can you determine what side effects you have when taking medication? All of these answers can provide researchers with valuable data that can help them better understand the disease. A better understanding of diseases leads to more treatment options and better care.
I know participating in research sounds daunting. It’s hard not to think, “will I have to get off my current medications?” or “will I potentially be taking or doing something that is unsafe?”
I think I can speak for us all when I say how grateful I am that there are people who will participate in clinical trials despite these concerns. Luckily you can be a part of research just by sharing your experience with a disease. Before we get into the various ways you can participate in medical research, let’s start off with a few definitions:
Interventional– Interventions include but are not restricted to drugs, procedures, devices, behavioral treatments, etc.1
Observational– “Investigators assess health outcomes in groups of participants according to a research plan or protocol. Participants may receive interventions (which can include medical products such as drugs or devices) or procedures as part of their routine medical care, but participants are not assigned to specific interventions by the investigator (as in a clinical trial).”2
Clinical Trial – “Clinical trials are research studies performed in people that are aimed at evaluating a medical, surgical, or behavioral intervention.”3 Some subjects will be given intervention, which could be a drug, device, or some other medical intervention (i.e., diet change) while others will not receive the intervention. Comparisons are then made between the two groups to determine the efficacy of the interventional treatment.
Double-Blind Study – “A type of clinical trial in which neither the participants nor the researchers know which intervention participants are receiving until the clinical trial is over. This makes the results of the study less likely to be biased. Results are also less likely to be affected by factors that are not related to the treatment or intervention being tested.”4
Ways To Be Involved In Research
Surveys
Difficulty Level – Easy to Moderate
Have you ever used a product or service and have been asked to take a brief survey to share your results and feedback? That’s research! Surveys are everywhere, including in medicine. Many diseases, such as migraine, vary so much from person to person, therefore large-scale survey collection is needed to assess the full scope of the disease. Some surveys, like Migraine in America, help healthcare providers understand the impact migraine is having on their patients. Survey results can help providers be more aware of lesser-known symptoms, common comorbidities, medication side effects, helpful complementary therapies and so much more. Many times this form of research is anecdotal, meaning the claims are made based on personal observation.
Some migraine treatments can be assessed (anecdotally) for efficacy and side effects via apps that may also track migraine characteristics and patterns. Some apps allow for sharing this data with your doctor. Next time you are asked to participate in a brief survey about migraine treatments, consider taking it as it can help researchers provide healthcare providers with recommendations and help identify areas of improvement for treatments and tools.
Some surveys may only consist of a few questions on an app while others may be hundreds of questions requiring a lot of time and extended screen exposure. Be sure you understand what is expected out of you (including time requirements) before agreeing to participate in a survey. Sometimes the longer, more involved surveys offer some sort of compensation for your time.
Observational Research
Difficulty Level – Easy to Moderate
Observational research helps investigators identify patterns and develop hypotheses that need to be further researched.
In this form of research, investigators are observing participants in their routine environment, meaning you are not required to take a new medication, stop taking a medication or change your lifestyle. An example of this may be investigators observing migraine patterns in people who practice different diets, such as veganism, low-carb, keto, etc. An investigator may report on the frequency of attacks in people within each group. If the results show that there is a low incidence of migraine in the vegan group, it may influence the development of an interventional research project on the impact a vegan diet has on migraine.
Double-Blind Clinical Trial (not studying medications or invasive procedures)
Difficulty Level – Moderate to Challenging
Interventional research is critical in measuring the safety and efficacy of devices or other non-medicinal interventions such as therapy. When studying interventions that are not invasive or not consumed, there may be a lower incidence of side effects and less room for potential harm. However, participation is still rated as moderate to challenging because participants may be required to get off their current medications which could impact the results of the study. This form of research is more controlled so you may have to make lifestyle changes to be sure the study is measuring the impact of the intervention and not outside factors. Another consideration is that participants may not be receiving any treatment at all if they are being given a placebo or if the intervention being studied is not effective. On the flip side of this, though, you could get a new treatment that you respond well to.
Double-Blind Clinical Trial (studying medications and surgical procedures)
Difficulty Level – Challenging
This form of research is similar to the type described above. It can be demanding of participants but it also comes with the potential added challenge of experiencing more side effects. While it is the most challenging form of research to be involved in, it is absolutely critical in new treatment methods receiving FDA approval.
Donating or Raising Funds
Difficulty Level – Easy
If you are not ready to be a participant in research just yet that’s ok. You can show your support for medical research by donating to organizations that are conducting or funding research. Of course, a challenge with donating is not always having the funds to do so. But remember, if every American living with migraine donated just $1, we would have almost $40 million dollars to fund new research. You could also consider starting a fundraiser to garner the support of your friends and family. AMD is a proud funder and supporter of migraine research. If you’d like to help us fund research projects, you can make a donation here.
While all of these options come with their own unique challenges, the reward is knowing that you are making a difference in medical advancements. By participating in research (at any level) you play a role in improving care and treatment options for not only yourself but also future generations. Another reward is understanding your disease and overall health better. Researchers aren’t the only ones learning! By participating, you will be asked to think critically about your disease and truly evaluate multiple aspects of living with your condition.
If you are a member of the BIPOC community, your participation is greatly needed. Right now, people that are Black, Native American, or Hispanic are underrepresented in research. Whites make up 67% of the U.S. population but are 83% of research participants.5 Black/African Americans make up 13.4% of the U.S. population, but only 5% of trial participants.5 Hispanic/Latinos represent 18.1% of the U.S. population, but less than 1% of trial participants.5
Not only will your participation help us understand how diseases impact different races and ethnic groups, but you may also serve as inspiration for other BIPOC members to get involved.
References
- https://hub.ucsf.edu/clinicaltrialsgov-definition-clinical-trial
- https://clinicaltrials.gov/ct2/about-studies/learn
- https://www.nia.nih.gov/health/what-are-clinical-trials-and-studies
- https://www.cancer.gov/publications/dictionaries/cancer-terms/def/double-blind-study
- https://acrpnet.org/2020/08/10/representation-in-clinical-trials-a-review-on-reaching-underrepresented-populations-in-research/
MEET THE AUTHOR
Melissa graduated from the University of Rhode Island with a B.A. in Public Relations and a B.S. in Textiles, Merchandising and Design. While Melissa began her career in the fashion industry, she has always had a passion for philanthropy which was a fundamental part of her past jobs at Alex and Ani and as the Development Director for a local fashion designer.
In 2017, Melissa became immersed in the non-profit world, joining AMD as their Social Media Coordinator. Over the years, her role has grown to the Director of Communications where she handles much of the external communications for the organization, including relationship building with patients, medical professionals, organizational partners and media. Melissa also manages several of the organization’s programs, including Shades for Migraine, The Migraine Symposium, and the Research Is Hope fundraising campaign. Aside from her fulfilling career with AMD, Melissa has a passion for real estate, animal welfare, and traveling.