| Summary |
This is a commentary on the importance of registries to further science. Benefits of establishing a registry include amassing information, improved registry function over time, engaging online communities of PALS and their families, assessing risk factors, connecting patients to clinical trials, and providing data for researchers. Conversely, there are also issues with any registry: risks to privacy; time consuming registration and survey completion for patients; restrictions on information being translated back to the patient; and concerns with registry databases having inconsistent, unverified, or biased data. |