Kidney Cancer Association CONNECT Patient Registry

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Bigregistry.org Connects Kidney Cancer Researchers with Patients

Patient Registry

BigRegistry.org

Registries help patients and their families find answers to common questions

We have launched an important new initiative--a patient registry for kidney cancer. Patient registries are important for a number of reasons, including:

  •     They help promote improved diagnosis and medical care among families and healthcare providers, and to reach families who are not connected to specialty care providers
  •     They help researchers characterize and understand the global patient community; gain access to data for pre-clinical and clinical research; and link families with research opportunities
  •     They help pharmaceutical companies connect with researchers and patients to conduct pre-clinical and clinical trials
  •     They help empower patients and families through valuable knowledge, direct rapid contact, and identification of important concerns
  •     They help patients and their families find answers to common questions about kidney cancer; learn about genetics, inheritance, and genetic testing; and explore up-to-date information about medical research and clinical trials

Joining the Kidney Cancer CONNECT registry at BigRegistry.org means your medical information – de-identified, so it doesn’t contain your name, date of birth, or other identifying data – can be added to information from other kidney cancer patients. You retain ownership of your data, and you decide whether to opt in – or opt out – of the registry. You also can be informed of research opportunities that can help advance understanding of renal cancer and its management.

KCA is able to operate its registry thanks to the professionals at PatientCrossroads, the leading manager of patient registries worldwide. We are very excited about this opportunity, and we hope you will consider joining BigRegistry.org, the Kidney Cancer CONNECT patient registry. Knowledge is power, and the more that we all know about renal malignancies the more powerful the results can be.

KCA is a charitable organization made up of patients, family members, physicians, researchers, and other health professionals. It is the world’s first international charity dedicated specifically to the eradication of death and suffering from renal cancers. It is also by far the largest organization of its kind, with members in more than 100 countries.

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Carrie Konosky
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