We have launched a patient registry for kidney cancer. 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 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 kidney cancer and its management.
The Kidney Cancer Association is able to operate this 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 the Kidney Cancer CONNECT registry. Knowledge is power, and the more that we all know about kidney cancer the more powerful the results can be. Join at www.BigRegistry.org.