CART-WHEEL.org: An Ethically Approved Online Database for Patient-Entered Data to Facilitate Rare Cancer Research

Abstract

Purpose: Rare cancers are challenging for researchers, as clinicians and scientists have difficulty recruiting sufficient patient cases to power studies appropriately. Likewise, patients often are frustrated by a lack of specific information or evidence base for their cancer and, although eager to participate in research, have limited opportunities. We established CART-WHEEL.org, an online patient-entered database, to directly engage patients in the research process, collect rare cancer data, and facilitate their entry into additional research.

Patients and methods: Patients access CART-WHEEL.org directly online. Clinical information is collected from users via a streamlined questionnaire developed collaboratively with consumer groups to ensure accessibility and relevance. Data collected include the following: patient demographics, comorbidities, and risk factors and tumor diagnostic, biomarker, and treatment history. Patients can download a medical summary for personal use; consent for research use of data; and indicate willingness to be contacted about other research or clinical trials. We describe data collected to date and its validation, and we provide examples of how CART-WHEEL.org can facilitate rare cancer research.

Results: From January 2010 to March 2018, 558 patients provided consent and entered their rare cancer data. One hundred distinct rare tumor types and patients from 22 countries were included. Validation of data entered by 21 patients with sarcoma against a hospital database demonstrated accuracy sufficient to facilitate future research in key fields, such as tumor site (95%) and histopathologic diagnosis (90%). Examples of CART-WHEEL-based disease-specific projects, subsequent recruitment to other rare cancer projects, and rare cancer patient cases of interest are described.

Conclusions: Online platforms like CART-WHEEL.org can engage consumers directly, facilitating collection of patient-entered rare cancer data for hypothesis generation, and connect patients with researchers to enable specific rare cancer research and clinical trials.

FIG 1.

Consents and Registrations to CART-WHEEL.org. From January 2010 to January 2018, 881 patients registered to CART-WHEEL.org. A total of 585 patients consented to the use of their data for research purposes. An increase in recruitment in 2017 relates to targeted recruitment via CART-WHEEL.org for the Waldenström’s Macroglobulinemia Whimsical study.

FIG 2.

Patients registered and consented to CART-WHEEL.org. All patients who consented and entered data were included in demographic analysis. Only patients with a rare malignant tumor diagnosis were included in analysis of other events. ICD-O, International Classification of Diseases for Oncology.

FIG 3.

The types of rare tumors reported by patients consented to CART-WHEEL.org. More than half of the patients consented to CART-WHEEL.org reported having a hematologic malignancy, reflecting consumer support of the Whimsical project specific to Waldenström’s macroglobulinemia. Sarcoma and gynecologic rare cancers were the next most common types of cancers. An additional 35 rare tumor types were reported.