Would a Data Bank Fill Epilepsy Care Gaps?

Epilepsy has scores of factors, each leading to different treatment strategies and complicating the development of an evidence-based approach to seizure control.

Because so few epilepsy patients have the same causative and complementary factors, even neurologists with hundreds, if not thousands, of patients would lack sufficient comparison data to achieve anything beyond anecdotal evidence.

Now, an editorial published in Epilepsy and Behavior calls for the creation of a national—or better yet, international—data bank of epilepsy treatment response.

Health care professionals today base their knowledge of antiepileptic drugs and their mechanisms of action on animal studies. Nonclinical animal studies incompletely predict human efficacy because some drug combinations work in animals but not humans, and vice versa. There is also the possibility that other mechanisms are at work in humans.

Tapping into clinical experience could help link epilepsy patients to appropriate care faster. The author of the editorial provides examples of patients who possess similar factors, sought care years apart, and achieved results with identical or near-identical therapies.

A data bank could help prescribers find similar epilepsy patients treated in the past. The author proposes expanding practice and data collection beyond current rational polytherapy by including the use of multiple drugs with differing mechanisms of action without the use of clinical data.

Such a data bank may help answer the following questions:

· Does the area of seizure onset matter?

· Do shared autonomic features matter?

· Why do patients respond or lack response to specific therapies?

· Are subjective observations sufficient?

The author commends the progress made by New Zealand and Australia’s EpiNet Project, which has enrolled more than 7000 patients into its data bank. The project has already aided patients with rare forms of epilepsy by sharing progress made in other cases.

However, the security of such a large amount of personal data is paramount. Through a similar and/or wider program, patients may receive quicker and more complete symptomatic control.

Using examples of patients who might benefit, or possibly help others benefit, the author provides a good argument for using data banks in epilepsy, prompting the thought that this approach could be helpful in other diseases, as well.