I have always been a fan of registries as they offer so much information that is maybe contained in the data base but is buried and not available in a format that offers intelligence.  Patient information is de-identified and there are certain provision for patient to meet to participateimage in the National Proactive Surveillance Network.  The network was actually launched in 2010 with the combined efforts of both hospitals.  A portal is used called “myConnect” and researchers can analyze and work with the data sets and allows for the doctors and patients to review and track their own data.  As a matter of fact there was an article in the news today from Reuters stating how web information on prostate cancer is hard to understand and that the NIH recommends that sites get closer to a 4th or 6th grade reading level. 

Back to the patient side, they need to commit to digital rectum exams, urine tests and PSA tests and you can read more of the specifics below.  This offers an alternative choice to radical prostate cancer therapy if such is not immediately needed.  Prostate cancer can grow very slow or it can be the opposite and genomic research with studying mutations is also helping add some light with determining which case the patient may have.  Both hospitals are studying tissue samples as well as blood and urine, one on each coast.  Whether the cancer is fast or slow growing biopsy tissue will be tested.   A good example of how a registry can pay off in another health area is at Kaiser Permanente to where they were able to analyze and provide the best fit hip and knee replacements for patients, so if it is having success in the area of orthopedics, it should also give a lot of information not only to researchers but also help the doctors and patients make better founded decisions based on the additional information that has become available.  BD

Kaiser Permanente Registry Information Pays Off With Hip and Knee Replacements For Patient Having Double Hip Surgery (Video)

Newswise — Johns Hopkins Medicine, along with the Prostate Cancer Foundation and Cedars-Sinai Medical Center, have launched the National Proactive Surveillance Network, an online resource for men diagnosed with low-grade prostate cancer that can be slow-growing and non-life-threatening in up to 50 percent of diagnosed cases. The network is structured to actively manage prostate cancer in patients who qualify for proactive surveillance, which entails careful monitoring rather than invasive treatment. It will also provide a national resource for prostate cancer experts to advance their knowledge with the goal of providing better care.

Funded by a $5 million program grant from the Prostate Cancer Foundation, the program will use protocols developed by urologists at Johns Hopkins Medicine, which has the nation’s largest patient population under active surveillance for prostate cancer with more than 1,000 men enrolled since 1995. The network includes myConnect, an interactive patient portal designed to track the progress of a patient’s treatment with interactive charts and graphs, connect patients with network physicians, schedule appointments and personalize news content to receive proactive surveillance alerts. The service is HIPAA-compliant for patient privacy and security.

Patients who join the National Proactive Surveillance Network will undergo biannual digital rectum exams, urine tests and PSA tests, as well as a yearly prostate biopsy. Patients will also answer lifestyle and nutrition questionnaires and record their medical history. In addition to providing an efficient model for proactive surveillance, the network will collect and sort data in a scientific-blinded fashion — with absolutely no patient name association — so researchers can analyze trends and the success of the program. Patient samples, including blood and urine, will also be analyzed and banked with patient consent by Johns Hopkins Medicine on the East Coast and Cedars-Sinai Medical Center in the West. The repository of blood and urine will support future biomarker and genetic studies.



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