Patient longitudinal data which are collected over long periods of time reveal a more complete picture of many rare diseases than temporal data alone. Children suffering from rare diseases are more likely to visit multiple providers of care over long periods of time such as one or more pediatricians and various specialists. Plus, being so young their bodies are changing at a rapid pace and require more frequent observations. Longitudinal data about these encounters are extremely valuable, and access to multiple data sources is also of critical importance.

Without access to these longitudinal data, researchers for rare diseases don’t have the freedom or ‘latitude’ to widen the scope of their data queries which could otherwise yield new insights for cures and treatments.

Providers and parents of these children should be aware that companies in the health care IT space are making dramatic strides towards making it easier to collect more, and more varied, longitudinal data from more sources which can be pulled together easier in “registries”.

In the not so distant future, a treasure trove of de-identified patient data will be available to researchers regardless of their physical location, and it will be standardized and researchable like never before with 10s or 100s of times more data than available before. The data will come from myriad sources, and patients themselves will play a more active part entering data themselves through online portals several times more useful to researchers than the first portals developed a decade ago.

There will be a learning curve for patients and parents of patients, but, usability in top portals has been carefully addressed, and it should be a welcome change from the spiral notebooks of handwritten data so many parents of children with rare diseases are used to filling up and storing in boxes. Parents will relish knowing these data can be effectively aggregated and used to their fullest potential for the greater good; and this era is coming sooner than you think.

Author: RemedyMD Staff Contributor

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