Success Story: Patients at the Forefront of DCIS De‑Escalation Through the LORD Trial 

May 18, 2026

The LORD trial (LOw Risk Ductal carcinoma in situ – DCIS) – a landmark international study that places patients at the center of research design, decision-making, and dissemination was developed through close collaboration between researchers and patient advocates. The LORD trial demonstrates how meaningful patient partnership can reshape clinical research and improve relevance, feasibility, and impact. 

The trial is led by Prof. Dr. Wesseling, at the Netherlands Cancer Institute (NKI) in collaboration with international partners and patient organizations, including Borstkanker Vereniging Nederland, BOOG Study Center, and Europa Donna. Central to this effort are patient advocates Ellen Verschuur and Marja van Oirsouw, whose engagement has helped reshape how DCIS is studied and managed. 

Addressing What Matters Most to Patients 

Although DCIS is frequently detected through screening, most lesions never progress to invasive breast cancer. Still, many women undergo surgery and radiotherapy, treatments that can have long-lasting physical and psychological consequences. 

From the earliest conception of the LORD trial, patient partners raised a critical question: 
If many DCIS lesions are unlikely to become harmful, how can care better reflect women’s preferences and lived experience? 

The trial directly responds by evaluating active surveillance as an alternative to standard treatment, aiming to reduce overtreatment while ensuring safety, improving patient outcomes and quality of life. 

A Model of Deep, Sustained Patient Engagement 

Patient advocates were involved from the outset and across the entire research lifecycle. Since 2017, they have contributed to: 

  • Trial conception and protocol development, helping define objectives, endpoints, and acceptable follow-up strategies 
  • Grant preparation, providing patient centered feedback on proposals 
  • Trial conduct, through participation in monthly meetings, site visits, and interpretation of data from a patient perspective 
  • Governance and dissemination, including co‑authoring publications, presenting at conferences, and leading communication efforts through patient organizations 

Their role has consistently been one of a true partnership, with lived experience recognized as a form of expertise equal to scientific and clinical input. 

How Patient Input Strengthened the Study 

Patient feedback led to one of the most impactful changes in the LORD trial design. 

Initially launched as a randomized controlled trial, it faced major accrual challenges. Patient questionnaires revealed that many women declined participation because they strongly preferred one management option and wanted to retain decision-making control. 

In response to this insight, the LORD trial was redesigned in 2020 as a patient preference trial, allowing women to choose between standard treatment and active surveillance. This shift: 

  • Better reflected real-world decision-making 
  • Aligned the study with patient values and provided them agency 
  • Dramatically improved feasibility and recruitment 

Following the redesign, enrollment increased ten‑fold, and by the end of 2025, over 2,000 women had been enrolled toward a target of 2,500. 

Embedding Patient Centered Outcomes and Communication 

Patient partners also shaped what outcomes were measured and how. Beyond safety, they emphasized quality of life, decisional confidence, anxiety, and psychological well-being. As a result, patient-reported outcomes were embedded as key secondary endpoints. 

To support informed decision-making, patient advocates co-created: 

  • Clear, accessible patient information materials, including flyers and videos 
  • Plain language summaries of scientific publications 
  • Webinars, newsletters and social media through national and European patient networks 

These efforts ensured accessibility and trust across patient and clinical communities.  

Looking Ahead 

The trial’s interim analysis found no early signs that active surveillance is unsafe for women with low-risk DCIS, an important signal that carefully selected women may forgo immediate treatment without compromising their safety. As the LORD trial moves toward publication of its final results, these early findings are already shaping the international conversation on how low-risk DCIS should be managed. 

Obviously, the approach developed through the LORD trial offers a transferable model of patient-led partnership, demonstrating how early, continuous engagement can enhance scientific rigor, feasibility, recruitment, and societal relevance in clinical research. 

Celebrating Exemplary Patient Partnership 

We congratulate the LORD research team and the patient advocates of Borstkanker Vereniging Nederland, Europa Donna, and the DIRECT‑DCIS consortium for exemplifying how amplifying the patient voice leads to more freedom of choice, better science, stronger feasibility, and more meaningful outcomes. 

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