WeConnectPatients.com
Medicine is built on data. For too long, it wasn’t built on yours.
Clinical research has historically excluded large portions of the population. That gap doesn’t just affect representation — it affects outcomes. Here’s what that means, and what we’re trying to do about it.
The Problem
What underrepresentation in clinical research actually means.
For decades, the majority of clinical trials were conducted predominantly on white male participants. Research has documented this pattern across therapeutic areas — with women systematically underrepresented until federal requirements changed in 1993, and racial and ethnic diversity remaining a persistent gap.
This is not a historical footnote. The consequences are ongoing.
A drug studied primarily in one demographic group may behave differently across other populations — in how it is metabolized, what side effects emerge, and what doses are effective. This phenomenon is documented in the scientific literature and is one basis for FDA guidance encouraging diverse trial enrollment.
The Black community carries a disproportionate burden of certain diseases — including many of the conditions Takeda studies. The same is true for Hispanic and Latino communities, for Indigenous populations, for people from low-income backgrounds, for rural communities, for older adults, and for people whose gender identity has historically led to their exclusion from research enrollment criteria.
Acknowledging this history is not an accusation aimed at any one company or research institution. It is a starting point. Closing that gap starts with naming it.
The Science
Diverse data produces better medicine. That’s not rhetoric — it’s how science works.
When a clinical trial enrolls people who reflect the full range of individuals living with a condition — across race, ethnicity, age, sex, gender identity, and geography — the data it produces is more complete. That completeness matters for everyone.
More complete data supports better dosing accuracy. More complete data enables a more thorough safety profile. More complete data increases the likelihood that a treatment will work for a broader population when it reaches the market.
The inverse is also true. When a treatment is approved based on a narrow data set, every patient who doesn’t fit that profile is, in a meaningful sense, being cared for with incomplete information. That’s a scientific problem with real health consequences.
Diversity in clinical research is not a concession to politics. It is a requirement for rigorous science.
The Gaps
The gaps are specific.
Understanding the gaps is the first step toward closing them.
Race and ethnicity
Black and Hispanic/Latino patients are enrolled in clinical trials at rates that consistently fall below their share of the disease burden they carry — a gap documented across therapeutic areas including oncology, cardiovascular disease, and neurology. Indigenous and Native Hawaiian/Pacific Islander populations are often so underrepresented in enrollment data that their experiences cannot be meaningfully analyzed — effectively excluded from the evidence base.
Age
Older adults — particularly those over 65 — are routinely underrepresented in trials despite being the primary users of many approved medications. Age restrictions in eligibility criteria frequently exclude the populations who will ultimately take the drug.
Gender identity and sex
Transgender, nonbinary, and gender-diverse individuals are rarely tracked as distinct populations in clinical research. Women were systematically excluded from many trials until federal requirements changed in 1993 (NIH Revitalization Act) — and underrepresentation persists in many areas today.
Disability status
People with physical, cognitive, or sensory disabilities face exclusion through eligibility criteria that were not designed with them in mind — activity requirements, site visit frequency, comorbidity restrictions. Disability intersects with race, age, and income in ways that compound these barriers.
Socioeconomic status
People who cannot afford to miss work, who lack reliable transportation, or who don’t have access to a specialist relationship often cannot participate in trials — regardless of their interest. The infrastructure of clinical research has historically been designed around people with resources and flexibility.
Geography
Rural communities and people in medically underserved areas have less access to clinical trial sites. Distance is a real barrier that has not been systematically addressed.
Our Approach
How WeConnect approaches this.
WeConnect is designed to reach and reflect the full range of people living with the conditions Takeda studies. That means outreach that goes beyond the academic medical centers and specialty practices that have historically attracted the same patient populations. It means a registry that doesn’t require insurance, a referral, or a specialist relationship to join.
It means building a deep understanding of who is living with each condition — who they are, what barriers they face, and what it would take to make research feel accessible and worth joining. That understanding explicitly includes LGBTQ+ individuals, caregivers, people whose primary language is not English, people in rural communities, and people navigating care with limited financial resources.
It means being honest, in materials like this one, about the history we’re operating in. WeConnect cannot single-handedly close the representation gap in clinical research. But it can be a more accessible, more honest, and more intentional entry point — and that’s where it starts.
The Ask
Your participation changes the picture.
When you register with WeConnect, you’re not just looking for something for yourself. You’re adding your experience, your biology, and your health journey to a data set that will eventually inform care for everyone who comes after you — including people who look like you, live where you live, and carry the same conditions.
The history of clinical research includes significant failures of equity — failures that disproportionately affected people who were marginalized from the research process, without providing a proportionate return from their participation. We understand why that history makes trust difficult. We’re not asking you to forget it.
We’re asking you to decide, on your own terms, whether the research being done now — with the protections in place now — is something you want to be part of. That’s a legitimate question, and we respect whatever your answer is.
If the answer is yes, registration is the first step.
“After all, clinical research is here for the good of all people.”
— Monica Merino-Lopez, WeConnect registrant, as quoted on WeConnectPatients.com
Not ready to register? You can learn more about what registration involves before making any decision. What WeConnect is →
Join the registry. Shape the future.
Registration is free. It takes about 10 minutes. And you can leave at any time.