Blood Donations Provide Lifesaving Treatments and Potential Research Opportunities


An ongoing partnership answers the call of blood donors by providing new clinical research opportunities. After the success of community-focused studies to develop COVID-19 vaccines and treatments, blood donors asked what more they could do as research participants to improve the health of their community.

Through an ongoing collaboration between San Diego Blood Bank and LunaPBC, blood donors are able to support health research along with providing a lifesaving donation.

“When we began collecting convalescent plasma for COVID-19 hospital patients at the height of the pandemic, donors who recovered from the virus came out in droves to donate to help those in their community and beyond,” said Nikhil Nayak, Chief Business Officer for San Diego Blood Bank. “Our blood donors often ask about additional ways they can support our mission, so we are proud to afford them the opportunity to influence the future of personalized medicine through innovative programs like this.”

San Diego Blood Bank is a platform for ensuring the community’s health by connecting its resources and diverse blood donors with research opportunities. Luna was the optimal partner because of its people-centered framework that increases participant engagement and retention, ensures interventions meet the priorities and needs of individuals, and facilitates comprehensive, longitudinal studies.

Read San Diego Blood Bank and LunaPBC Provide Blood Donors an Opportunity to Contribute to Health Research.

“Factors such as genetics, age, gender, and ethnic origin play an important role in the effectiveness of medical treatments, which is why diversity in research participants is incredibly important,” said Nayak.

Dedicated blood donor Jeff Gonka said, “One standard blood donation could save up to three lives, but one small blood sample donated for research could potentially save thousands of lives.”

Do you live in or visit the San Diego area often? Join the San Diego Research Community on Luna today.


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.


Reflections for 2023


In 2022, Luna prioritized quality research, privacy, and community. We launched a number of studies with partner organizations, established Community Driven Innovation™, and shared our thoughts on the changing dynamics surrounding health privacy. Looking ahead, Luna reflects on the previous year to predict the important trends of 2023.

Privacy and Trust Concerns Grow in Research

Dawn Barry

Dawn Barry, Luna president and founder

Unfortunately, the health space has lost ground in consumer trust, with growing criticism in areas like pandemic response, mRNA vaccines, data surveillance and selling, and cyber breaches involving medical information. This lack of trust could further hinder people’s involvement with research, especially as the industry looks to incorporate digitalization — through real-world data, decentralized clinical trials and wearables — into next-generation trial designs. To move forward, we need to get back to basics on human trust. We need to be transparent, consistent, clear in our communications, inclusive and ethical. In other words, we need to do what’s right.

Acknowledging that individuals should control the research use of their data is only a starting point. Embracing modern data privacy laws like GDPR and CCPA is another meaningful step in demonstrating respect for study participants.

Labor-Shortage Crisis in Health Care

Joe Beery, Luna chief executive officer

The healthcare worker shortage is a significant worldwide concern, and what’s also embedded in this challenge is that many of our most experienced doctors also operate as lead researchers for new medicines and therapies. We need to ensure the funnel for vital research that feeds innovation is protected and that this population of professionals is well taken care of.

Participant-Reported Research

Ian Terry

Ian Terry, Luna senior user experience researcher

Measuring patient-reported outcomes is key to ensuring medical interventions meet the needs of the people they aim to serve. But what about patient-reported goals, lived experiences and quality-of-life desires? In 2023, I want to see more research that starts with and fully integrates the patients’ goals and measures how those outcomes were met. In establishing a full continuum that’s centered on what patients need and want, the patients win because they ideally get something that improves their life — not something industry thought they needed — and researchers and industry establish more clinically relevant outcomes to meet, thereby de-risking their development efforts.

Measuring patient-reported outcomes is key to ensuring medical interventions meet the needs of the people they aim to serve.

Balancing Life, Research, and Work

Debora Thompson

Deb Thompson, Luna vice president of operations

COVID-19 spurred the necessity of virtual work on a scale not seen before. It changed people’s perspectives on work-life balance. On the positive side, the flexibility of being able to interweave work with life means fewer missed opportunities to spend time with family, exercise, and take a breath when needed. On the negative side, missed interaction with fellow employees means more missed opportunities to brainstorm, forge bonds and connect. As always, a balance is needed to garner the best of both worlds. Why, then, do we not require the same balance with research? Tests, measurements, and doctor-patient interactions are extremely valuable to research; however, they are only one side of the story. “Real-world evidence” and “real-world data” are not things that can be fully captured in a doctor’s office or clinical site that people are forced to travel to — increasing their stress, anxiety, and other negative symptoms. What are the real lived experiences, symptoms, and behaviors of people in their normal environment? Scientists and doctors must be willing to listen to the experiences of the patients themselves; they must be willing to include data captured from patients in their normal environments. Real “real-world data” is not the electronic health record; it is the voices of the people who live with a condition. We must have REAL #LifeResearchBalance.

Protecting Privacy

Scott Kahn

Scott Kahn, PhD, Luna chief information and privacy officer

De-identification of personal data has become a myth. We live in an age of re-identification because of the proliferation of data that can be collected on individuals and the power of artificial intelligence. De-identified DNA data is an oxymoron. The world must fully embrace a rights-based approach to data control that seeks targeted informed consent for personal data use. This approach is used with the EU’s GDPR, other countries and is now expanding state-by-state across the U.S.


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.


Expanding the Conversation Around PCOS with Participant-Led Research


Affecting more than 115 million women globally, polycystic ovary syndrome (PCOS) is not considered a rare disorder. However, it’s often underdiagnosed, under-researched, and under-discussed. Diagnosis usually comes after other disorders have been ruled out, a process that often takes two years or more for women. 

To advance understanding and support for people with the disorder, PCOS Challenge: The National Polycystic Ovary Syndrome Association partnered with Luna to raise the collective voice of those affected and drive patient-focused research. 

“One of our key goals is to unite the major PCOS stakeholders in the largest organized effort to address gaps in care and to find a cure for PCOS,” says William Patterson, founding Executive Board member and current Director of Public Affairs at PCOS Challenge. 

PCOS Challenge has had a long history of elevating those affected by PCOS as partners in research. “Many investigators miss a huge opportunity by not fully engaging patients as true partners in research and discovery. There is a tendency to design studies with little-to-no meaningful patient involvement and to seek a rubber stamp from patients,” he says. 

“We see the frequent misalignment between government, clinical, and patient research priorities which often stem from not listening to patients from the earliest stages of research and its impact on treatment, care, and counseling,” Patterson says. “We see this as an important means of leveraging patient insights, priorities, lived experiences, and skills to fill gaps in the literature, disrupt outdated narratives negatively impacting patient care, and accelerate discovery.”

Many problems exist regarding access to care and quality of care for those with PCOS, stemming from a lack of focus on health policy, underfunding of research, and the type of research being funded, he said. 

We see this as an important means of leveraging patient insights, priorities, lived experiences, and skills to fill gaps in the literature, disrupt outdated narratives negatively impacting patient care, and accelerate discovery.

William Patterson

“Historically, the National Institute of Child Health and Human Development (NICHD) funded about 70% of PCOS research. While the NICHD has done tremendous work and contributed greatly to our understanding of PCOS, its mission is largely limited to human development and reproductive health. When you have only one institute funding a majority of PCOS research, it ultimately creates a skew in the literature.  In this case, the skew is largely toward the reproductive aspects of PCOS,” he says. 

This equates to PCOS being viewed as a reproductive disorder, not a lifelong debilitating condition that comes with other co-morbidities, including mental health, metabolic, cardiovascular, endometrial cancer, liver disease, and other health risks.

“Through our awareness and advocacy efforts, we’ve expanded the conversation around PCOS, so patients and health professionals are more aware of the co-morbidities associated with the disorder and the impact of PCOS on people throughout their lifespan.”

This is why a patient registry is critical, says Patterson.

Propeling discoveries for PCOS research

Two studies have already been launched: the PCOS Challenge Economic Burden Study, which examines the intangible and indirect costs of having PCOS, including quality of life and work productivity, and the PCOS Pregnancy and Maternal Health Study, which aims to identify the gaps in education about pregnancy, and maternal and child health to improve awareness and counseling. 

The medical literature suggests women with PCOS are at greater risk of experiencing maternal health complications, like preeclampsia, pregnancy-induced hypertension, and pre-term delivery. These two studies will help provide a clearer estimate of the economic burden and true costs of having PCOS in terms of quality of life and work productivity and help close gaps in awareness, education, and counseling related to pregnancy and maternal and child health risks for those affected by PCOS.

“We see the Luna platform and our patient-powered registry as a means to focus on the questions that patients want to be answered,” Patterson said.

Patient-led research provides mentoring opportunities for investigators

PCOS Challenge is working strategically to reach as many individuals as possible and to empower multiple stakeholders through its patient-powered registry, The PCOS Challenge Study. One of the advantages of the PCOS Challenge partnership with Luna is that it helps the organization achieve one of its goals: getting more early-career scientists involved in PCOS research. 

“We see a lack of mentoring and development opportunities for early-stage PCOS investigators,” he says. “In connection with the PCOS registry, we are creating an early-career forum to help these emerging investigators receive mentoring opportunities from senior investigators in the field where we have relationships.” 

As an extension of the organization’s mission, the studies also help PCOS Challenge shape the future of medicine by promoting a unified, international research agenda that includes patients and scientists contributing to understanding PCOS and supporting individuals who live with the condition.


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.


newborn feet

Use of Genomics in Newborn Screening Offers New Insights and Decisions


Newborn screening (NBS) in the United States has been used for more than 50 years and is often touted as the world’s most successful public health program. Some 99% of the nation’s children are screened at birth for treatable genetic conditions caused in whole or in part by variations in their DNA sequence. Screening has saved infants, and their families, from enormous suffering.  

Recently the NBS program has garnered even more attention and interest thanks to the groundbreaking work by Rady Children’s Hospital to leverage genomics more broadly in the screening and treatment of infants.  Recently, clinicians have pushed to expand the NBS list of treatable genetic conditions.  

The price of genomic testing has continued to come down and innovations in understanding genetic disorders have also been demonstrated to relieve financial pressures on the healthcare sector. In fact, rapid and effective treatment early in life has been shown to be less costly than chronic conditions that would otherwise require ongoing intervention by the health system. 

What is newborn screening?

In the United States, small blood samples are collected from every infant shortly after birth and analyzed for treatable genetic disorders. Newborn screening was pioneered in 1963 by Robert Guthrie, MD, for diagnosing phenylketonuria, a genetic disorder that affects metabolism leading to toxicity that damages the brain.  

Today, it has become a public health practice in all States to screen newborns for a minimum of 29 treatable disorders to detect inherited genetic disorders. The Advisory Committee for Heritable Disorders in Newborns and Children recommends screening for 61 conditions, 35 of which are conditions that are screened in all 50 states. Over the past decade, the use of low-cost DNA sequencing to diagnose and treat sick children suggests that expanding the Recommended Uniform Screening Panel from 35 treatable conditions to a much more comprehensive set is both possible and affordable for the U.S. healthcare system. 

Long-term follow-up is key to ensuring the information learned through DNA sequencing of newborns is appropriately communicated and integrated into clinical care with the family’s pediatrician.  

The path to genomic screening in infants 

Funding of the sequencing of 100,000 patients in England by the U.K. Department of Health in 2013, Genomics England piloted the use of whole genome sequencing (WGS) in 4,660 children suspected of having rare genetic conditions.1 In parallel, Stephen Kingsmore, MD, and Rady Children’s Institute of Genomics Medicine championed ultra-rapid WGS to diagnose affected newborns within 13 hours.2 These efforts, in conjunction with other programs around the world, established the use case of WGS delivering precision care to pediatric practice and set the stage for use of WGS to screen newborns earlier in life and before symptoms appear. 

It is believed there are currently roughly 600 conditions for which early-life intervention will improve the longer-term health of the child. This motivated the National Health Service in the U.K. to begin piloting newborn screening using WGS in 2021. In the U.S., New York is funding the GUARDIAN initiative to offer WGS NBS for 100,000 newborns in the state to screen for 250 conditions and to characterize the diagnostic benefits to the child and the health economic impact on the health system. 

Long-term follow-up is key to ensuring the information learned through DNA sequencing of newborns is appropriately communicated and integrated into clinical care with the family’s pediatrician.  

Luna, in collaboration with the American College of Medical Genetics, Genetic Alliance, and various medical systems, is engaged in a study to understand the follow-up needs of families and children affected by spinal muscular atrophy and other conditions who receive their diagnosis through NBS. This study uses Luna’s Community Driven Innovation™. This participant-led methodology addresses long-standing problems with traditional research approaches while providing an unbiased, clear understanding of the priorities, values, and challenges of individuals, families, and communities. One of the objectives of this study is to understand the impact of both NBS and long-term follow-up for children impacted by one of the conditions covered with current screening programs and potentially recommend changes in patient care. The NBS study may prove the feasibility of one path to improved care moving forward. 

Consider privacy issues with newborn screening research 

As new medical approaches are implemented, parents have important decisions to make prior to enrolling their newborn into WGS studies. Consider the risk and benefits involved regarding further use of DNA data after screening for genetic conditions. They should ask how their child’s data will be used in research, by whom, over what period, and for what types of research. Who makes these decisions is a function of the data privacy and protection regulations in various states and countries.  

One’s genome uniquely identifies them—and their family—for their entire life, so understanding the impact of early decisions such as these is critical. 

As new medical approaches are implemented, parents have important decisions to make prior to enrolling their newborn into WGS studies. Consider the risk and benefits involved regarding further use of DNA data after screening for genetic conditions.


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

What Makes Your Skin Healthy?

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.