Clinical trial enrollment in rare cancers remains stubbornly low. In T-cell lymphomas, a heterogeneous group of over a dozen distinct subtypes affecting roughly 9,000 new patients annually in the United States, fewer than 7 percent of eligible patients participate in clinical trials. This statistic has persisted for decades despite growing recognition of the problem by professional societies, advocacy organizations, and regulatory agencies.
The conventional explanation focuses on awareness. Patients don’t know about trials. Oncologists don’t discuss them. The solutions proposed tend to follow accordingly: educate patients, remind physicians, mandate trial discussions as part of standard care, embedded directly within NCCN treatment algorithms.
According to a landmark landscape report by the American Cancer Society Cancer Action Network (ACS CAN), a substantial portion of eligible cancer patients never enroll simply because their doctor never brought it up. When patients actually are asked to participate, more than 50 percent agree to enroll. The bottleneck is rarely patient refusal; it is the lack of an initial provider offer. This “Never Asked” phenomenon has led premier advocacy groups like the Leukemia & Lymphoma Society (LLS) to provide structured “PACES” conversational guides and navigation toolkits, empowering patients to break the ice.
These efforts matter. ASCO’s 2023 Research Action Plan identified clinical trial participation as a strategic priority. The FDA Oncology Center of Excellence has emphasized broadening eligibility criteria. NCI’s National Clinical Trials Network has worked to expand community site participation. Despite these efforts, enrollment rates have remained low, particularly in rare hematologic malignancies where the denominator of eligible patients is already small.
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There is a structural barrier that receives less attention: The tools we give patients to find trials are not designed for patients.
ClinicalTrials.gov is the federal registry of clinical trials and the resource most commonly accessed when seeking trial information. It currently lists over 500,000 studies. For a patient with a common cancer (breast, lung, colon), navigating this volume is challenging but feasible with guidance. For a patient with a rare cancer subtype, this search often becomes futile.
Consider a patient newly diagnosed with angioimmunoblastic T-cell lymphoma, a subtype comprising roughly 15 to 20 percent of peripheral T-cell lymphomas. ClinicalTrials.gov has no filter for this specific subtype. Searching “angioimmunoblastic” returns a mix of interventional trials, observational studies, completed studies, and trials for other lymphoma types that mention the term in passing. The results are presented in technical language optimized for investigators, not patients or community oncologists trying to counsel them.
The patient, or more likely, a family member researching late at night, must parse each listing individually. There is no plain-language summary. There is no indication of whether a trial is likely to be relevant to their specific subtype, treatment history, or geographic location. There is no prioritization to help distinguish a landmark phase 3 randomized trial from a small phase 1 dose-escalation study at a single academic center.
This is not a criticism of ClinicalTrials.gov. It serves its intended purpose as a comprehensive registry. But a registry is not a navigation tool, and we have been treating it as both.
The gap is particularly significant in rare cancers for two reasons. First, the signal-to-noise ratio is worse. A search that returns 300 results for a disease affecting 9,000 patients per year will contain a high proportion of tangentially relevant listings. Patients must do more work to find fewer applicable trials. Second, community oncologists who treat rare lymphomas infrequently may have less familiarity with the trial landscape and fewer resources to curate options for their patients.
Professional societies have acknowledged this gap in various ways. The Lymphoma Research Foundation maintains trial search resources. The Cutaneous Lymphoma Foundation provides patient education and support services. ASH has invested in digital platforms for member education. But none of these efforts have fully solved the subtype-level navigation problem for rare lymphoma subtypes, partly because the source data in ClinicalTrials.gov is not structured in a way that supports it.
What would a purpose-built solution look like? It would organize trials by specific disease subtype, not broad diagnostic categories. It would provide plain-language summaries alongside technical details. It would allow filtering by treatment stage, newly diagnosed versus relapsed or refractory, because patients at different points in their treatment journey need different trials. It would show geographic information so patients can identify trials at reachable centers. And it would be freely accessible, requiring no login, no institutional affiliation, and no medical literacy beyond a basic understanding of one’s own diagnosis.
These are not theoretical requirements. They reflect what patients and community oncologists actually need when they sit down together and ask: Are there any clinical trials for this?
The technology to build such tools now exists at relatively low cost. APIs from ClinicalTrials.gov allow programmatic capturing of trial information, which can be automated to fit organizational workflows. Natural language processing can classify trials by disease subtype with physician oversight. AI-powered interfaces can help patients and users describe their clinical situation and questions conversationally and receive relevant matches.
I recently built a platform along these lines for T-cell lymphoma, TrialCompass TCL, as a free, publicly available resource. It currently curates more than 200 actively recruiting trials across 14 T-cell lymphoma subtypes directly from ClinicalTrials.gov with plain-language summaries and subtype-specific filtering. In its first several weeks, over 400 users visited the platform with average session durations exceeding 15 minutes, which is around five times the benchmark for health information websites.
These engagement metrics, although early, suggest something straightforward: Patients want this kind of resource. When trial information is organized by their specific disease, written in language they can understand, and presented in a navigable format, they engage with it deeply.
The point is not one specific platform. It is that the model (specialist-curated, subtype-specific, patient-accessible trial navigation designed for a patient/family member with no medical knowledge) addresses a structural gap that awareness campaigns alone cannot fill. You can encourage a patient to “ask about clinical trials” at every visit, but if the tools available to explore those trials require the information literacy of a clinical researcher or logistical understanding of a clinical trial navigator, you have not meaningfully improved access.
Every rare disease community deserves a curated trial finder. The barriers to building them have dropped substantially. Trial navigation is itself a clinical access problem, one that should receive the same care and thoroughness we bring to developing the therapies those trials are designed to test.
Adit Singhal is a hematology-oncology fellow.
