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There are many ways you can help researchers and healthcare providers learn more about kidney cancer. One way is to participate in clinical trials to help identify new or better ways to treat kidney cancer. There are other ways you can contribute, too. Learn more about how two KCA partner organizations, xCures and pattern.org, are including patients in the research process!

Data-Driven Research

KCA has partnered with xCures to create an Observational Research Platform for patients with kidney cancer. The KCA/xCures partnership represents a joint effort to support both patients and researchers in an effort to advance kidney cancer science and pursue cures by collecting real-time, regulatory-grade data to understand which treatments show the most promise for kidney cancer patients.

How can I participate?

With your permission, we can gather your or your loved one’s medical records and organize them so they can be easily analyzed by data scientists, clinical scientists, and leading oncologists.

You have the option to upload any records you have available, but this is not required. The platform automatically gathers, structures, and normalizes records from any US-based institution, in any form, and utilizes artificial intelligence and natural language processing to compile the data into a clinical database.

By completing the forms and signing an informed consent form, you can donate clinical and medical data to research. As part of your participation, you will register on xCures Patient Portal xINFORM and receive access to all your electronic medical records and a consolidated, structured summary of your cancer history.

What will happen to the data?

Members of the xCures study team will use your medical records to create data ready for research and make it freely available to academic, non-profit, and government researchers in a de-identified format. xCures scientific and clinical staff will work together with KCA researchers and leading clinician-scientists to better understand how kidney cancer is treated.

When promising new treatments are identified, or if patients with particular features are found to benefit (or not benefit) from different treatments, the results will be published and shared at national research conferences.

Data may be licensed to pharmaceutical companies seeking to develop drugs in kidney cancer to accelerate approvals for kidney cancer patients. Every time a company licenses kidney cancer data, xCures donates money to KCA to support ongoing clinical research.  Together, we can learn what the best treatments are for different types of patients!

How do I benefit from participating?

As a participant, you benefit by:

  • Receiving a comprehensive care summary with information from all institutions where you have received care that include changes in your health and treatments
  • Having the ability to share your personal health summary with your care team, including new care providers.
  • Empowering you and your care providers to make more informed and effective treatment decisions.

The doctors and researchers benefit by:

  • Having regulatory-grade clinical data that is essential to the advancement of medical research.
  • Being able to learn from patients treated in community settings as well as in large medical centers, ensuring that data from more patients is included to reliably understand the disease.
  • Understanding patient populations to better design clinical trials

Drug manufacturers benefit by:

  • Learning how they drugs are working in real-world clinical practice, outside of formal clinical trials
  • Defining new patient populations that may benefit from their drug to seek additional approvals

KCA benefits by:

  • Demonstrating leadership in creating a nationwide research database to advance clinical science and accelerate the identification of cures
  • Receiving funding from any data licenses to pharmaceutical companies, to support ongoing clinical research

Tissue-Driven Research

Pattern.org is a patient-driven platform that empowers rare cancer patients to consent to donate their excess, fresh tumor tissue to support scientific research. Pattern.org, an initiative of the Rare Cancer Research Foundation (RCRF), has partnerships in place with institutions such as MD Anderson Cancer Center and Emory University/Aflac Cancer Center. In working with the KCA, more people with rare kidney cancer types have the opportunity to contribute to research efforts.

Is my type of kidney cancer eligible?

RCRF and Pattern.org work alongside MD Anderson Cancer Center and Emory University/Aflac Cancer Center, which are dedicated to generating models, exploring cell lines, and making genomic insights for rare kidney cancers, all of which will lead to a better understanding of how these cancers develop and help create new treatment options. The research projects focus on a broad spectrum of rare kidney cancer subtypes including chromophobe RCC, renal medullary carcinoma (RMC), translocation RCC, papillary RCC, and others. In contrast to clear cell RCC, the most common type of kidney cancer, these rare types together represent about 20-25% of all kidney cancer diagnoses.

Rare kidney cancer types are typically underfunded and understudied and people with these diagnoses face more challenges when it comes to treatment options, access to clinical trials, and maintaining good quality of life.