Certainly the idea of creating patient registries is not a new one. Tumor registries have been in existence for many decades. However, it seems that moving such registries to the web and moving their locus of control to foundations has given them new life and purpose. Details of this evolution were provided in a recent article in the New York Times (see: Tool in Cystic Fibrosis Fight: A Registry), Below is an excerpt from the article:
In the 1950s, children with cystic fibrosis usually died before they reached kindergarten age, their airways choked with mucus by a genetic disorder that disrupts their ability to clear infections from their lungs. Today, many people with the disorder are living well into their 30s and beyond....These patients owe their lives, at least in part, to a carefully updated nationwide collection of personal profiles called a patient registry. The Cystic Fibrosis Foundation...manages the electronic registry, which tracks treatments, results and health status on patients from more than 100 centers around the country. Researchers say that by identifying the most effective treatments for each patient, it has played a crucial part in doubling the average life expectancy of the estimated 30,000 cystic fibrosis patients in the United States. Now the idea is being widely copied. Advocates for patients with an array of intractable diseases like Parkinson’s, lupus and juvenile diabetes are among the latest to begin developing registries, and the National Institutes of Health is promoting a linked network of registries for rare diseases with fewer than 200,000 patients....The Cystic Fibrosis Foundation analyzes all the data and shares its findings, helping doctors, researchers, patients and their families seek out patterns and clues for DNA solutions, new drugs and physical therapy....Using the cystic fibrosis registry as a model, the National Parkinson Foundation has just started its own registry. It plans to enroll thousands of patients....Preliminary data in the new registry showed that patterns of treatment were not consistent and that patients had far more additional diseases and cognitive issues than expected, the foundation said at the World Federation of Neurology meeting last week. At the National Institutes of Health, the Office of Rare Diseases Research is bringing together managers of registries next month to plan connecting links and other support for a federation of Internet-based patient registries and other data repositories.The joint effort is intended to reduce the costs of running a registry for many of the 1,000 groups in the United States that represent people with specific diseases.
Although this article makes no reference to the web, I am sure that web technology accounts for some of the recent successes of these chronic disease registries. Use of the web plus a standardized architecture for new registries provides broad access to them by patients, physicians, and family members alike across the country. I believe that it's quite relevant that the Cystic Fibrosis Foundation manages the registry for patients with the disease. I am sure that this accounts in part for its broad reach and set of goals. If it were under the control of, say, an academic institution, it's possible that the focus of the registry might be more on research issues rather than broad patient care issues and family concerns.
It also comes as no surprise to me that a new registry for patients with Parkinson's disease is already demonstrating that "patterns of treatment are not consistent and that patients had far more additional diseases and cognitive issues than expected." Such is the power of data aggregation and ongoing analysis. Physicians often tend to treat patients one at a time rather than paying attention to broad patterns of symptoms and treatment. Kudos also to the Office of Rare Diseases Research, National Institutes of Health, for hatching the idea of creating a "federation" of Internet-based patient registries and data repositories to reduce the cost of establishing new registries." This will make it easier to provide the benefits of registries to patients with diseases that are uncommon. Cross-disease comparisons will also become more practical. I am sure that no one will be move motivated to participate than the families of children with rare diseases as soon as they are given access to an effective tool like a disease registry.
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