diabetic-insights
The Role of Jdrf in Funding Research for T1d in Underrepresented Populations
Table of Contents
The Juvenile Diabetes Research Foundation (JDRF) has long been a driving force in the fight against Type 1 Diabetes (T1D), funding groundbreaking research that has transformed the lives of millions. Yet for many years, a significant gap persisted: the voices and biological realities of underrepresented populations were often missing from that research. Today, JDRF is actively working to close that gap by prioritizing inclusive, diverse studies. This commitment is not just about fairness—it is about scientific accuracy. T1D does not affect all people equally, and effective treatments and cures must account for genetic, environmental, and socioeconomic differences across populations. By funding targeted research for underrepresented groups, JDRF is building a future where every person with T1D has access to care that truly works for them.
The Importance of Inclusive Research in Type 1 Diabetes
Historically, medical research has suffered from a lack of diversity. Clinical trials and genetic studies have overwhelmingly enrolled white, middle-class participants, leaving vast gaps in our understanding of how T1D manifests and progresses in other populations. This homogeneity is dangerous: treatments developed from a narrow dataset may be less effective—or even harmful—for people with different genetic backgrounds or lived experiences.
For example, the prevalence of T1D varies significantly by ethnicity. According to the Centers for Disease Control and Prevention (CDC), non-Hispanic white children have the highest incidence rate, but the rate is rising among Hispanic and African American youth. Furthermore, outcomes diverge starkly: racial and ethnic minorities often experience worse glycemic control, higher rates of diabetic ketoacidosis at diagnosis, and greater complications such as kidney disease and retinopathy. These disparities stem from a tangled web of genetic predispositions, social determinants of health, and systemic barriers to care.
Without inclusive research, we cannot untangle that web. JDRF recognizes that achieving health equity for T1D requires studying the full spectrum of human diversity—including variations in immune system responses, insulin sensitivity, and psychosocial factors. Inclusive research also means ensuring that clinical trials reflect the real-world demographics of the T1D community, so that new therapies like immunotherapy, artificial pancreas systems, and beta-cell replacement work for everyone.
Historical Gaps and Their Consequences
Decades of underrepresentation have created blind spots. For instance, many early genetic studies of T1D focused on European-ancestry cohorts, leading to less accurate risk prediction models for non-European populations. A landmark paper published in Nature Genetics highlighted that polygenic risk scores developed from European data perform poorly in African and Asian populations, potentially misclassifying risk for millions of people. In T1D, similar biases could delay early diagnosis and preventive interventions for high-risk minority children.
JDRF’s inclusive research agenda directly addresses these historical inequities. The organization funds studies that deliberately recruit diverse cohorts, analyzes biomarkers across ancestries, and examines how environmental triggers (like diet, viruses, and stress) interact differently across communities. By filling these knowledge gaps, JDRF is helping to build a more complete picture of T1D—one that leads to better treatments for all.
JDRF’s Strategic Approach to Funding Underrepresented Research
JDRF employs a multifaceted strategy to ensure that its funding portfolio reflects the diverse reality of T1D. This includes dedicated grant programs, community partnerships, and data infrastructure designed to lower barriers for researchers and participants alike.
Dedicated Grant Programs and Initiatives
JDRF has launched several targeted initiatives to stimulate research in underrepresented populations. One prominent example is the Diversity in Clinical Trials Initiative, which provides specialized funding for studies that recruit participants from minority and underserved communities. This program supports everything from pilot feasibility studies to large-scale longitudinal cohorts. Additionally, JDRF’s Health Equity Research Grant focuses specifically on understanding and eliminating disparities in T1D care and outcomes.
These grants are often structured to encourage collaboration with community-based organizations, historically black colleges and universities (HBCUs), and tribal health centers. By seeding research at institutions that serve underrepresented groups, JDRF helps build local expertise and trust.
Community Engagement and Partnership Building
Funding alone is not enough. JDRF invests heavily in community engagement to overcome the deep-seated mistrust many minority communities have toward medical research—a legacy of unethical practices like the Tuskegee syphilis study. Through its Community Ambassador Program, JDRF recruits and trains leaders from diverse backgrounds to serve as liaisons between researchers and their communities. These ambassadors organize educational workshops, host listening sessions, and help design culturally appropriate recruitment materials.
JDRF also partners with organizations like the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) and the American Diabetes Association on joint initiatives aimed at diversifying clinical trial participation. For example, the Type 1 Diabetes Clinical Trials Network has actively worked to increase enrollment of minority children and adults through multilingual outreach and mobile trial units that bring research to rural and urban underserved areas.
Data Collection and Biobanking for Diversity
Another critical piece is the collection of robust, diverse data. JDRF funds multi-ethnic biobanks that store genetic samples, serum, and health records from people with T1D of all backgrounds. These repositories enable researchers to conduct large-scale analyses of how genetic variants influence disease risk and treatment response across different ancestries.
Notably, JDRF supports the RADIANT Study (Rapid Acceleration of Diagnostics in Underserved Populations), which aims to identify biomarkers for T1D progression in high-risk diverse populations. By combining genetic data with environmental and behavioral data, such studies can reveal novel pathways for intervention.
JDRF also advocates for standardized data collection on race, ethnicity, and social determinants of health in all funded studies. This allows for the stratification of outcomes and the identification of disparities that might otherwise be masked by aggregate data.
Challenges and Barriers to Inclusive Research
Despite JDRF’s efforts, significant challenges remain. Overcoming these barriers is essential for making inclusive research the norm rather than the exception.
Mistrust of the Medical Establishment
Generations of discrimination, from forced sterilization to unethical research, have fostered profound mistrust in many minority communities. African Americans, Native Americans, and other groups may be reluctant to participate in clinical trials, fearing exploitation or harm. JDRF addresses this by prioritizing transparency, consent education, and long-term relationship-building. The organization ensures that community leaders are involved from the start, rather than being consulted only for recruitment.
Financial barriers also play a role. Clinical trial participation often requires time off work, childcare, and transportation—resources that are scarce for low-income families. JDRF’s grants often include funds to reimburse participants for these costs and to provide support services like interpreters and patient navigators.
Language and Health Literacy
Language differences can exclude non-English speakers from research. JDRF has made concerted efforts to offer informed consent forms and study materials in Spanish, Mandarin, Vietnamese, and other languages. However, true inclusivity goes beyond translation: it requires cultural tailoring of messages about T1D and research. For instance, concepts like “immunotherapy” or “beta-cell preservation” may need to be explained in plain, relatable terms. JDRF funds community health workers to bridge these communication gaps.
Access to Healthcare and Diagnosis
Underrepresented populations often face delays in T1D diagnosis and poorer access to endocrinology care. This complicates research enrollment, as many potential participants are not identified until late in the disease course. JDRF advocates for screening programs in underserved areas, such as school-based testing for islet autoantibodies, to identify at-risk children early. The JDRF T1D Screening Initiative partners with pediatric clinics in low-income neighborhoods to offer free autoantibody testing and connect families with research opportunities.
Success Stories and Impact: Research That Makes a Difference
JDRF-funded studies are already yielding insights that directly improve outcomes for underrepresented populations. These success stories demonstrate the real-world power of inclusive research.
Genetic Discoveries in African American and Hispanic Populations
A JDRF-supported study published in Diabetes Care examined genetic risk factors for T1D in African American and Hispanic youth. It identified novel loci associated with T1D susceptibility in these groups that were not present in European cohorts. These findings are now being used to develop more accurate risk prediction models that account for ancestry, enabling earlier screening and preventive interventions in high-risk minority children.
Another project, the SEARCH for Diabetes in Youth study (funded in part by JDRF), has tracked the incidence and outcomes of diabetes among diverse youth for over two decades. SEARCH data revealed that Hispanic and non-Hispanic black youth with T1D have significantly higher HbA1c levels than white peers, even after adjusting for socioeconomic status. This finding spurred targeted interventions, such as culturally-tailored diabetes education programs and community health worker support, which have improved glycemic control in pilot studies.
Improving Access to Technology in Underserved Communities
Continuous glucose monitors (CGMs) and insulin pumps dramatically improve T1D management, but uptake has been lower among minority and low-income populations. JDRF funded a study in Atlanta that provided CGMs to African American children from low-income families and paired the devices with weekly telehealth coaching. Over six months, participants saw a 0.8% reduction in HbA1c, and the intervention was so successful that it was expanded to multiple cities. This work demonstrates that with targeted support, technology can reduce, not widen, health disparities.
Partnerships with Tribal Nations
JDRF has begun collaborating with Native American communities, where T1D appears to be more aggressive and less studied. A pilot project in partnership with the Navajo Nation established a T1D registry, trained local healthcare workers in diabetes management, and conducted genetic studies to understand why some Navajo individuals develop the disease. The project has built crucial trust and opened the door for larger intervention trials.
Future Directions and JDRF’s Commitment to Health Equity
JDRF’s work is far from complete. The organization has laid out ambitious goals for the next five years to further embed inclusivity into every facet of its research funding.
Expanding the Research Portfolio
JDRF plans to increase the proportion of its research budget specifically allocated to health equity and underrepresented populations to 15 percent by 2027. This will fund more studies on social determinants of T1D, implementation science to bring proven interventions to underserved settings, and research on disparities in adult-onset T1D (which is often misdiagnosed in minority populations as Type 2 Diabetes).
Additionally, JDRF is launching a Global Diversity Initiative that supports research in regions where T1D incidence is rising fastest, such as sub-Saharan Africa and South Asia. By funding local investigators and building research infrastructure in these areas, JDRF aims to understand how the disease manifests across different environments and ancestries.
Leveraging Partnerships for Greater Impact
No single organization can solve these challenges alone. JDRF is deepening partnerships with the National Institutes of Health (NIH), the U.S. Food and Drug Administration (FDA), and patient advocacy groups to harmonize diversity requirements across funding bodies. The organization also collaborates with the pharmaceutical industry to ensure that clinical trials for new T1D therapies include diverse participants from the outset, rather than as an afterthought.
Public-private partnerships, such as the JDRF-Critical Path Institute Consortium, are developing tools to reduce the cost and complexity of including underrepresented populations in trials. These tools include patient-reported outcome measures validated for different cultural groups and models for decentralized trials that use mobile technology to reach participants at home.
Advocacy and Policy Change
JDRF also pushes for policy changes that support inclusive research. The organization advocates for increased federal funding for T1D disparities research through the Special Diabetes Program at the NIH. On the industry side, JDRF works with manufacturers to ensure that new devices and medications are tested in diverse populations and are affordable for all patients.
Looking ahead, JDRF is championing the concept of precision public health for T1D—using data on genetic, environmental, and social factors to deliver the right intervention to the right population at the right time. This approach could revolutionize prevention, diagnosis, and care for every community.
Conclusion: A Call to Action for Inclusive Science
JDRF’s commitment to funding research for T1D in underrepresented populations is not just a moral imperative; it is a scientific necessity. The organization has demonstrated that inclusive research leads to better understanding, better treatments, and ultimately, better health outcomes for everyone. But sustained progress requires continued investment, community engagement, and a willingness to confront the systemic barriers that perpetuate disparities.
For individuals and families affected by T1D, supporting JDRF’s inclusive research agenda can be as simple as participating in a clinical trial, sharing your story to raise awareness, or donating to programs that prioritize health equity. For researchers, the call is to design studies that reflect the diversity of the communities they serve. For policymakers, it is to fund infrastructure that makes inclusive research feasible.
As JDRF’s work shows, the path to curing T1D runs through every community, not just the ones that have historically been studied. By ensuring that everyone is included in the journey, we can finally deliver on the promise of a world without Type 1 Diabetes—for all people, everywhere.