woman with headache
Community

Early Results of Migraine and Severe Headache Study Reveal Insights

by Luna

Veronica Day recalls that she began having severe headaches in her early teenage years. The fluorescent lights, constant stimulation, changing hormone levels, and the smells and noise associated with middle school all may have contributed to the frequent headaches.

Veronica Day
Photo courtesy of Veronica Day

“I would just put my head down on my desk,” Day said. Over the years, she would medicate herself with over-the-counter painkillers, but the headaches continued to increase in intensity and she’d frequently find herself at the emergency room. After a particularly severe headache led to another ER visit, she was finally referred to a neurologist. 

“They started asking me really important questions,” she said, questions that previous doctors had not taken the time–or had known–to ask her. With her doctor’s prompting, Day began keeping a migraine journal, figuring out her triggers, and trying different medications.

“Once I finally had someone who was asking the right questions and helping me figure things out, getting me on migraine medication–it was like night and day,” she said. “I was so impressed at how the right medication could help me.” 

Join the Migraine and Severe Headache Study

The Migraine and Severe Headache community helps to inform more intuitive research. Make your voice and experiences heard by providing your unique experiences and priorities with dealing with migraines and severe headaches.

Headaches and migraines are a top health priority for women

When results from Luna’s Women’s Health Study emerged, headaches and migraines were revealed to be a top five priority for participants. 

The subsequent Migraines and Severe Headaches Study focuses on understanding the experiences participants have when dealing with migraines and severe headaches. By understanding people’s priorities and needs associated with managing migraines and headaches, Luna hopes the results will help inform the direction of research related to better treatments and outcomes.

“With the information from the Women’s Health Study, we created a community to gather more people–not just women–who had concerns about migraines and severe headaches,” says Dawn Barry, founder and president of Luna. “We partnered with QualityMetric, which had a validated instrument to gauge severity. It was a great opportunity to take what we found in one study and further expand our findings to gain more actionable insights.” 

QualityMetric is a technology-enabled provider of patient health surveys. The Company uses a validated survey called the Headache Impact Test (HIT-6) that measures six items: pain, social functioning, role functioning, vitality, cognitive functioning, and psychological distress. This survey has been used to support the approval of new medications.

Day was encouraged by the study questions and agreed with the insights gleaned from the early results. “You’re asking the people who are suffering from migraines and headaches rather than just assuming what you think needs to be done,” she said. “By asking us ‘What’s your biggest complaint?’ or ‘What would you like to see happen?’ generates those open conversations.”

Insights from study hint at an unmet clinical need

More than three-quarters of study participants reported experiencing headaches at a level of uncontrolled chronic migraine. When it comes to treatment, a quarter said their headaches are still debilitating even after therapy. 

Assuming that all members of this community are diagnosed with migraine and are being treated for their migraine headaches, the HIT-6 scores indicate that three-quarters of migraines sufferers (HIT-6 score of 60 and higher) in this community are not having their symptoms managed properly with their current treatment. 

The impact of their migraine headaches are causing significant emotional burden, increased fatigue, disruption in cognitive functioning, and disability in performing daily role activities. “This would suggest that either individuals are not benefitting from their current migraine therapy and need a change in the approach to treating their migraine or these individuals are not adhering properly to their current therapy,” Mark Kosinski, chief commercial science officer at QualityMetric.

“Once I finally had someone who was asking the right questions and helping me figure things out, getting me on migraine medication–it was like night and day. I was so impressed at how the right medication could help me.”

Veronica Day

The study also shows that some individuals who report having headaches are likely having migraines. Preliminary results show the majority of community members are experiencing headaches at a level of uncontrolled chronic migraine. 

“In other words, these individuals could benefit from a follow-up with a neurologist to determine if their headaches are more than the common headache and warrant a treatment approach consistent with chronic migraine,” he said.

Day can certainly relate, as it took years and a neurology visit to diagnose her migraines. After the diagnosis, figuring out triggers and treatment became so much easier.

“This is one of the values Luna brings to the table,” says Barry. “We have communities of people who want to contribute to research. And for this particular study, it’s incredibly easy for people to participate and they are able to see insights from people like them generated by their own participation.”

Developing a long-term strategy to manage headaches and migraines

Day said journaling and tracking her headaches was one of the smartest things she did for herself. This allowed her and her medical team to figure out the best medication and dosage. “Sometimes you have to be patient because it takes a while to get the right dosage. Once I got the right dosage for me, my quality of life went way up.”

She recommends journaling to find triggers, asking questions of your medical team, and lastly, being patient with yourself. “Don’t let stigma get in your way,” Day said. “Be patient with yourself.”

To learn more about conducting community-led research on the Luna platform, visit Communities or contact collaborations@lunadna.com. 

About Luna

Luna’s suite of tools and services connects communities with researchers to accelerate health discoveries. With participation from more than 180 countries and communities advancing causes including disease-specific, public health, environmental, and emerging interests, Luna empowers these collectives to gather a wide range of data—health records, lived experience, disease history, genomics, and more—for research.

Luna gives academia and industry everything they need from engagement with study participants to data analysis across multiple modalities using a common data model. The platform is compliant with clinical regulatory requirements and international consumer data privacy laws.

By providing privacy-protected individuals a way to continually engage, Luna transforms the traditional patient-disconnected database into a dynamic, longitudinal discovery environment where researchers, industry, and community leaders can leverage a range of tools to surface insights and trends, study disease natural history and biomarkers, and enroll in clinical studies and trials.

Community

The Trauma Foundation Study Offers an Integrated Approach to Therapy in Underserved Communities

by Luna

Addiction, anxiety, depression, PTSD, and other chronic mental health conditions often can be traced to physical abuse, adverse childhood experiences, and long-term stress. Treating those conditions often requires addressing past trauma.

Because of the complex nature of trauma therapy and the fragmented landscape of how to provide that therapy, it is often necessary to develop an individualized treatment plan to be effective. While many types of therapies have proven effective at addressing certain components of trauma and symptoms of nervous system dysregulation, there is a need for a holistic, multi-disciplinary approach.

Individualized trauma therapy can be expensive and hard to obtain, especially for communities that lack resources and are suffering from difficult-to-access mental health therapy—that’s the gap the Trauma Foundation is working to fill.

“The way our mental healthcare system is set up, these newer modalities are primarily being delivered by clinicians in private practice—those who have the personal resources to go out and get these advanced trainings on their own and then determine how to integrate them together,” said Chris Rutgers, Trauma Foundation founder.

Presently, low-income and under-resourced individuals struggle to find access to mental health treatment, often because people providing support don’t have the resources of typical private-practice clinicians.

Offering an integrated approach to trauma therapy

In partnership with community health organizations, the Foundation established the Trauma Resilience Initiative, which connects best-practice trauma clinicians with underserved populations who lack the resources to access appropriate support and treatment.

“The big issue is how do we get these really effective treatment modalities into the mainstream in a bigger, better way into the world?” asks Rutgers.

“We’re collecting data on patients that is extremely sensitive information. They’re talking about their histories of abuse and neglect, and we certainly wouldn’t want any of that information to be unsecured.”

Chris Rutgers, Trauma Foundation

To answer that question, the Trauma Foundation launched a preliminary study in April 2021 to learn whether an integrative trauma therapy (ITT) approach could be delivered effectively to help individuals heal past trauma.

Partnering with Luna, the Trauma Foundation collected health experiences and data directly from participants over the course of the study. The results were recently published. Read the white paper.

Data privacy and security are important to the trauma community

Over the course of the seven-month study, the Trauma Foundation participants were asked to disclose intimate details concerning past trauma and adverse childhood experiences. Rutgers said it was important they partner with an organization that could ensure secure storage and privacy-preserving analysis of data.

“That was a critical component to the study. We’re collecting data on patients that are extremely sensitive information,” Rutgers said. ”They’re talking about their histories of abuse and neglect, and we certainly wouldn’t want any of that information to be unsecured.”

The Trauma Foundation was looking for a HIPAA-compliant platform that could collect the quantitative and qualitative data necessary for the study to ensure the privacy and anonymity of the participants.

Bojil Velinov, head of DevOps and Automation at Luna, said it’s vital to safeguard participants’ data by having a solid foundation of data security measures.
“People who contribute to the Luna platform see how their data is being used. This helps establish trust and demonstrates transparency when it comes to people sharing their data for research,” said Velinov.

Read the white paper from the Trauma Foundation

The 2021 Integrative Trauma Therapy Pilot served to address issues and better understand how to make effective trauma treatment more accessible. It connected best practice trauma clinicians with underserved populations lacking the resources to access appropriate support and treatment. The white paper outlines the approach to this pilot including clinician identification, training, client recruitment, treatment, and outcome findings.
Chris Rutgers, founder of the Trauma Foundation

Positive implications

The ITT study served two purposes: First, to assess the feasibility of providing an integrative approach to trauma treatment. And second, to understand how the approach can support clinicians in delivering a necessary form of mental health treatment for individuals with unresolved trauma that is often unrecognized or inadequately treated in the current healthcare system.

The group of study participants came from diverse socioeconomic backgrounds, but all had similar histories of trauma, adverse childhood experiences, and chronic stress. The results of the study demonstrated that it is possible to recruit a diverse group of participants who are willing to engage in long-term therapy and adhere to a structured treatment protocol.

The Trauma Foundation is looking to build off the success of first the ITT study and expand services to individuals, including billing, a partial hospitalization program, intensive outpatient program, and treating larger-scale groups of people.

“Next, we’re looking at building another study involving a group treatment model instead of one-to-one treatment. This would allow a group of clinicians to work with a larger group of 15 people at a time,” Rutgers said.

Increasing the scale of their efforts would ultimately allow more people in underserved communities to get the high-quality treatment they deserve. The Trauma Foundation is working to fulfill that mission through research, training, and treatment. And this is only the first step, Rutgers said.

To learn more about conducting community-led research on the Luna platform, visit Communities or contact collaborations@lunadna.com. 

About Luna

Luna’s suite of tools and services connects communities with researchers to accelerate health discoveries. With participation from more than 180 countries and communities advancing causes including disease-specific, public health, environmental, and emerging interests, Luna empowers these collectives to gather a wide range of data—health records, lived experience, disease history, genomics, and more—for research.

Luna gives academia and industry everything they need from engagement with study participants to data analysis across multiple modalities using a common data model. The platform is compliant with clinical regulatory requirements and international consumer data privacy laws.

By providing privacy-protected individuals a way to continually engage, Luna transforms the traditional patient-disconnected database into a dynamic, longitudinal discovery environment where researchers, industry, and community leaders can leverage a range of tools to surface insights and trends, study disease natural history and biomarkers, and enroll in clinical studies and trials.

sickle cell
Community

As One Foundation Launches Study Registry for Sickle Cell Trait Carriers

by Luna

By 1986, nearly every newborn in the U.S. underwent screening for sickle cell disease, a potentially fatal and painful disease caused by a genetic mutation. A rare condition, sickle cell disease only occurs in people who inherit a faulty HBB gene from both parents. The mutation causes hemoglobin, the protein in red blood cells that carries oxygen through the body, to stick together—forming a sickle shape.

For those newborns who only have one faulty HBB gene, their parents may have received a letter from the hospital explaining their newborn has sickle cell trait. It may become a concern if they have children with another sickle cell trait carrier when they’re older, but otherwise, they should live a long and healthy life with no symptoms of sickle cell disease.

And that’s a problem, says Tomia Austin, PhD, As One Foundation’s executive director. 

“Sickle Cell Disease” by National Institutes of Health (NIH) is licensed under CC BY-NC 2.0.

Understanding sickle cell trait

Because of the lack of awareness and research, many children and young adults grow up not understanding they have sickle cell trait. In fact, in rare cases, individuals with only one HBB gene mutation can still fall ill or even die from sickle cell disease-like symptoms, especially at high altitudes, during extreme exercise, or during severe dehydration.

Devard Darling, president and founder of the As One Foundation, was inspired to create the organization after his twin brother, a college athlete, died due to complications of sickle cell trait. 

Darling asked Austin to lead the organization’s efforts to improve sickle cell trait literacy, not only for carriers and their families but also for the medical community. 

“A lot of what’s going on with sickle cell trait is just personal stories. People are living it,” Austin says. “Doctors don’t know what they don’t know about sickle cell trait. There’s not enough research being done for sickle cell disease, let alone sickle cell trait.” 

“I’m very proactive in telling potential participants that they own their data when they join the registry. Their health data belongs to them.”

Tomia Austin, PhD

In addition to educational webinars, social media, events, and outreach to other sickle cell-focused organizations, Austin says there is a high need for evidence-based programming.

Using Luna to develop a sickle cell trait registry

“I thought, ‘what if I could pull together a registry to capture all of these patient experiences with pain and symptoms’,” she says. After reaching out to Genetic Alliance in 2020, As One Foundation applied and received funding and guidance to build a registry.

The registry queries participants on pain, chronic fatigue, muscle aches, pain recovery, physical activity, and other information. Because sickle cell trait problems can occur during activities like mountain climbing and deep-sea diving, Austin says they try to capture those scenarios where the person may have had a reaction that, at the time, they may not have attributed to sickle cell trait. Gathering this self-reported data through the registry will be important to developing evidence-based results. 

Austin is currently enrolling participants in the Sickle Cell Hemoglobinopathy Pain and Symptom Registry with the goal of having it completed by the fall of 2023.  She’s already three-quarters of the way there. She’s eager to dive into the data and share the results with the sickle cell community in the hopes of generating more research interest. 

Learn about the Sickle Cell Hemoglobinopathy Pain and Symptom Registry

Have you or a loved one experienced symptoms caused by sickle cell trait? Were you told that sickle cell trait was nothing to worry about and you’d live a normal life? Share your experience through As One Foundation’s Sickle Cell Hemoglobinopathy Pain and Symptom Registry.

Research begins by knowing the right questions to ask

To help encourage participation, Austin is reaching out to collaborate with other sickle cell disease organizations. “The majority of caregivers to sickle cell disease patients are people who are living with sickle cell trait,” she says. In fact, although sickle cell disease is considered rare (1 case per 15,000 births), about one in 13 U.S. newborns with African ancestry are diagnosed with sickle cell trait. 

In addition to educating individuals on the complications of sickle cell trait, Austin is also open to talking about the historical or cultural issues when it comes to research studies in the Black communities.  

“I’m very proactive in telling potential participants that they own their data when they join the registry. Their health data belongs to them. If at any point they are not comfortable with the study, they can exit the process,” she says. “Having sensitive health information safe and secure on Luna is a benefit, as well as the fact that participants always control their own health data.” 

“I also tell them ‘This is your opportunity to have your voice heard.’”

To learn more about conducting community-led research on the Luna platform, visit Communities or contact collaborations@lunadna.com. 

About Luna

Luna’s suite of tools and services connects communities with researchers to accelerate health discoveries. With participation from more than 180 countries and communities advancing causes including disease-specific, public health, environmental, and emerging interests, Luna empowers these collectives to gather a wide range of data—health records, lived experience, disease history, genomics, and more—for research.

Luna gives academia and industry everything they need from engagement with study participants to data analysis across multiple modalities using a common data model. The platform is compliant with clinical regulatory requirements and international consumer data privacy laws.

By providing privacy-protected individuals a way to continually engage, Luna transforms the traditional patient-disconnected database into a dynamic, longitudinal discovery environment where researchers, industry, and community leaders can leverage a range of tools to surface insights and trends, study disease natural history and biomarkers, and enroll in clinical studies and trials.

Community

A Success of Community-led Research with PXE International

by Luna

When Elizabeth Terry developed a strange rash-like condition on her neck, her mother did what most mothers would do—schedule appointments with the pediatrician, change laundry detergents, and try to determine why her child was having a reaction to an undetermined assailant. 

But it wasn’t an allergic reaction, it was a genetic condition that was later diagnosed as pseudoxanthoma elasticum (PXE), a genetic, slow-progressive disorder that affects the connective soft tissue of the body, causing loose, wrinkly skin. It can eventually result in vision loss and heart disease. 

It was only by chance that the Terry family lived a few houses down from a doctor who was familiar with the rare disease. Elizabeth’s mother, Sharon, took her to the appointment, along with Elizabeth’s younger brother Ian, in the hopes that he could make an accurate diagnosis. “Pseudoxanthoma elasticum,” he said, and then he glanced at Ian. “And he has it, too.” A biopsy confirmed the diagnosis.

An official diagnosis of PXE

With an official diagnosis, Sharon and her husband, Patrick, could look for research to understand the disease better, as well as doctors and treatments. Unfortunately, the research at the time predicted the siblings would soon succumb to the illness. 

“My mom and dad remember the Christmas of 1994 as the worst year of their lives because they thought both of their kids were dying,” Ian said. “Elizabeth and I remember that Christmas as the best of our lives because we got all the presents we could ask for.”

“She didn’t want other people to go through the fear that they went through…believing their kids were dying based on research that’s not remotely accurate.”

IAN TERRY

Over time, Patrick and Sharon decided that if the research on PXE wasn’t accurate, they would help mobilize patients, families, and researchers to increase understanding of the disease. The couple founded PXE International to accelerate research for treatment.

“She didn’t want other people to go through the fear that they went through,” Ian said. “Believing their kids were dying based on research that’s not remotely accurate.”

A model of shared research and advocacy 

The organization contacted a researcher at Jefferson Medical College to share their vision—a patient registry led by the advocacy group that would conduct research. 

“He kind of laughed and said, ‘Yeah, sure, bring me 400 people, and we can start the research.’” Ian said. It was a seemingly tall order for such a rare disease. “A year later, they had put together a group with about 2,000 to 3,000 people who had PXE.”

After growing up at PXE patient conferences and meeting others with the disease, Ian said it was a natural extension of his upbringing that he would move into advocacy himself. Now the senior user experience researcher for Luna, he is also invested in the collaborative work between Luna and PXE International.  

Learn about the PXE International Registry

The PXE International Patient Registry is the best way to provide experiences for studying pseudoxanthoma elasticum.

Research begins by knowing the right questions to ask

“Currently, the PXE study has more than 1,000 participants, and we’ve recently completed a biomarker study on Luna,” he says, contemplating how far the community-led research of the organization has progressed since its founding.  

“In the early days, PXE International conducted a study that was entirely in-person,” Ian says. “We’ve gone from filling out forms to registering 1,000 people on Luna and publishing our research soon, in a matter of months.”

One of the insights that have come to light through the registry is the appearance of modifier genes in PXE. The disease is defined by mutations in the ABCC6 gene, but the registry is finding some patients instead have mutations in the ENPP1 gene, as well as others.

“All of this interesting information we’ve been finding with Luna has previously been obscured this whole time because researchers haven’t been asking the right questions. You only get answers to the questions you know to ask.”

Sharon Terry explains it simply as a way to find answers more easily. “There is a popular cartoon of a person searching for their keys under a lamp post. The keys are right outside the circle of light. Luna allows PXE International to look where the keys are, rather than where the place that the light is already illuminating. If we know how to ask the right questions, we can get to the answers. Luna unleashes our power to ask the right questions and get to solutions faster and less expensive.”

To learn more about conducting community-led research on the Luna platform, visit Communities or contact collaborations@lunadna.com. 

About Luna

Luna’s suite of tools and services connects communities with researchers to accelerate health discoveries. With participation from more than 180 countries and communities advancing causes including disease-specific, public health, environmental, and emerging interests, Luna empowers these collectives to gather a wide range of data—health records, lived experience, disease history, genomics, and more—for research.

Luna gives academia and industry everything they need from engagement with study participants to data analysis across multiple modalities using a common data model. The platform is compliant with clinical regulatory requirements and international consumer data privacy laws.

By providing privacy-protected individuals a way to continually engage, Luna transforms the traditional patient-disconnected database into a dynamic, longitudinal discovery environment where researchers, industry, and community leaders can leverage a range of tools to surface insights and trends, study disease natural history and biomarkers, and enroll in clinical studies and trials.

Hands of different skin colors
Health

What Makes Your Skin Healthy?

by Luna

The health of your skin is impacted by a wide variety of factors and can have mild or dramatic effects on your daily life. By looking at individual genetics, family history, lifestyle decisions, environmental factors, and overall wellness, scientists can better understand how each of these factors impacts skin health.

Join our Skin Health Study to share research data.

As the body’s largest organ, your skin helps regulate temperature, retain fluids, and keep harmful bacteria out. In addition to the effects of aging and our own genetics, our skin is constantly battling ultraviolet radiation and pollution; undergoing cuts, abrasions, and burns; fighting off infections and inflammatory reactions; and a host of other elements.

In fact, there are more than 3,000 skin conditions known to the field of dermatology that span from life-threatening diseases such as melanoma to benign conditions like skin tags.

What can you do to keep your skin healthy?

Pay Attention to Your Body

Are they freckles or moles? How prone are you to sunburn? Does your skin react to certain allergens?

Knowing your skin can give you the best chance to take care of it. Recognizing new growths, moles, discoloration, or textures can be the first sign of a dermatological issue or a serious ailment.

For example, a symptom of diabetes is a skin condition called necrobiosis lipodica, which manifests as a shiny porcelain-like appearance that may become itchy and painful. Signs of hepatitis, liver disease and gallstones can make the skin turn a yellow hue.

Know Your Family History

Do you have family members with a history of skin cancer or psoriasis? While it’s important to keep track of major family medical details, knowing ancestry and other family history can help you prepare and advocate for certain tests and screenings for yourself. Sharing this information with your clinician can help you get access and insurance coverage for tests you may not otherwise be offered.

Consider Lifestyle and Environmental Factors

Drinking water consistently is good for your skin by keeping it hydrated. Using sunscreen protects the skin from damaging UV rays. Bad habits that can also affect your skin include poor sleep, poor diet, and smoking. Smoking can damage collagen and elastin, the fibers that give your skin strength and elasticity.

Do you live in a location that has high pollution or where it has a high amount of sunlight? Cold weather can cause the blood vessels to narrow causing skin discoloration, as well as reduced sebaceous gland secretion causing dry skin.

Your skin is incredibly delicate while also being strong and resilient. Determining all the different factors that go into making it the first line of defense while also one of the beautiful unique parts about us is what makes it special.

Understanding more about the genetics, lifestyle, environmental factors and overall health can help scientists determine their impact on skin health, progress research into skin conditions, and develop management and treatment of those conditions. 

To advance the science of skin, join the skin health study.

About Luna

Luna’s suite of tools and services connects communities with researchers to accelerate health discoveries. With participation from more than 180 countries and communities advancing causes including disease-specific, public health, environmental, and emerging interests, Luna empowers these collectives to gather a wide range of data—health records, lived experience, disease history, genomics, and more—for research.

Luna gives academia and industry everything they need from engagement with study participants to data analysis across multiple modalities using a common data model. The platform is compliant with clinical regulatory requirements and international consumer data privacy laws.

By providing privacy-protected individuals a way to continually engage, Luna transforms the traditional patient-disconnected database into a dynamic, longitudinal discovery environment where researchers, industry, and community leaders can leverage a range of tools to surface insights and trends, study disease natural history and biomarkers, and enroll in clinical studies and trials.