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.

data security mobile phone
Privacy and Security

The Evolution of Data Privacy: A Q&A with Bojil Velinov, Head of DevOps & Automation at Luna 

by Luna

Bojil Velinov, Head of DevOps & Automation at Luna, talks about the evolution of data privacy and how Luna is addressing privacy and data security at the company.

From your perspective, how has the conversation on data privacy evolved, and how are you addressing it at Luna?

Data privacy is moving more and more into mainstream conversation, from breaches of social media sites and data leaks to ransomware attacks at medical institutions. Some of our utmost personal information is stored in these places, so it becomes very intimate when such information falls outside of our control. 

Bojil Velinov
Bojil Velinov, Head of DevOps & Automation at Luna

On the professional side, at the last Amazon Web Services annual re:Invent conference, the people I met with and the talks I attended combined my interests in healthcare, regulatory compliance, and data governance. The apparent perspective is that the industry is increasingly focusing on protecting the data subject, which is the technical term for whom the collected data is about. I want to see this topic continue to get more attention.

How are you addressing data privacy at Luna?

We address data privacy and security in multiple ways. We operate by embedding “privacy-by-design” as part of our core values, and we recognize that online privacy needs to be built upon a foundation of data security measures. 

For example, one best practice we have is conducting yearly penetration tests, a type of security test that ensures our application stack is well protected against some of the most common attacks on the internet. It’s one of the ways we work to secure our platform. 

We also assess the risk(s) for every software feature, such as a login button, entry for one’s username, file uploads, and such. As part of our development process, we ask ourselves: “How do we prevent this feature from being vulnerable to attack?” Implementing detection, prevention, and recovery pieces into each assessed feature is part of our development life-cycle. By exercising due diligence in our design, development, and release processes, we keep the application stack more secure–and ultimately guard privacy.

How do you operationalize privacy-by-design at Luna?

It’s good to think outside the box, such as what possible future attacks on the software could occur. For example, how do we architect a way to be resilient to future vulnerabilities? One way is to utilize continuous integration and deployment (CI & CD) coupled with monitoring tools, security brainstorming sessions and vulnerability scans. 

We’ve taken privacy and security into account very seriously, and from the inception of the platform, one approach we utilize, for example, is envelope encryption–it’s a way to encrypt something in multiple layers. You can envision this as putting a box within a box, but imagine if each was locked within each one, and they have separate keys to unlock them. 

Another approach we have taken is not storing the data in the same location. We keep data fragmented. This way, if one particular location is compromised, it doesn’t reveal the complete picture of what the data represents. 

People who contribute to the Luna platform see how their data is utilized and to some degree magnified. That starts with our language and how we talk about it, it goes through how we implement the guards of that data and finishes with the granular controls of the data we give to each individual. All this establishes trust and demonstrates transparency. 

People have become increasingly aware of the importance of data security and how it affects data privacy. The volume of personal data people generate on the internet pertains to their privacy and their ownership of that particular data. I think what we do often try to put ourselves in the user’s perspective. People who contribute to the Luna platform see how their data is utilized and to some degree magnified. That starts with our language and how we talk about it, it goes through how we implement the guards of that data and finishes with the granular controls of the data we give to each individual. All this establishes trust and demonstrates transparency. 

Can you share more about the penetration test?

There are various ways of having a good posture from a security perspective. For example, how do we ensure our domain or company email is not used by a third party for spoofing? 

Pretend that a bad actor is phishing, for example. In phishing, a technique of fraudulently obtaining private information, email is the most common media. Nowadays there are some “geeky” mechanisms at our disposal, such as using specific signatures in the domain name system (DNS) records. Historically, DNS are the servers that help us find things on the internet. They are the ones knowing where you need to “land” when typing a website name in your browser’s address bar. Now, the same system is utilized to protect us from spam and phishing by allowing the receiver to check that an email claimed to have come from a specific domain was indeed authorized by the owner of that domain. This is technically known as DomainKeys Identified Mail (DKIM).

Here’s how it works:  You send an email from lunadna.com to a recipient using Gmail, for example. Upon receiving that email, the Gmail server checks for a setting in the lunadna.com  domain system. It says, “I am receiving this from this particular email service/server, can you confirm the server is authorized to send emails on your behalf?” Simple, yet powerful. I highly recommend any engineer involved with their company’s email and DNS to set this up. 

Many sites today use multi-factor authentication. What are the concepts here?

The concepts are evolving in multi-factor authentication. The tools around them are evolving. At Luna, we try to balance the impact of “extra steps” the member must take and their overall sign-in experience. At the same time, be upfront in explaining why we are putting such controls in place. In short, it’s because we really care for your data security, and we want to ensure that the person entering the platform is indeed you.

Take, for example, the case of ransomware attacks. The breaches in most of these security incidents, at various companies or individual accounts, happen because the password was compromised. That’s really the weakest link in the chain. It’s best not to reuse your passwords! Try using password manager technology to be most data safe. If one of your accounts gets compromised, bad actors can try it on other sites. If you did not reuse your password, you’d be less vulnerable. If you did, then you are out of luck.

Multi-factor authentication, in some cases referred as 2FA, can be leveraged in different ways, such as using email verification, text message, etc. It’s that additional control you put in place that, to some degree, provides another layer of protection. It also has its vulnerabilities, though. 

A practical way to think about multi-factor authentication is to balance the work required for authenticating the user to keep the bad guys out while keeping the process user-friendly. You don’t want to annoy your new participants with a slew of controls before they can see the benefit of your application. A little friction goes a long way, and it’s certainly better than the pain associated with sensitive data loss. 

Read about Luna’s Data Protection Impact Assessment.

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.