Dear Parkinson’s Support Group Members (please share with others),
Please use this letter as a Guide for your own letter.
c/o State Capitol, Suite 1173
Sacramento, CA 95814RE: Funds for the Implementation of the California Parkinson’s Disease RegistryDear Governor Brown
I am writing to you in support of implementing funding for the California Parkinson’s Disease Registry.
A Population-based registry for Parkinson’s Disease in California would enable large strides in research with considerable state and federal funding. While in 2004, the California Parkinson’s Disease Registry Act was signed into law, no state funds have been made available to establish or run such a registry to date.
If such an electronic system is developed and validated, they will for the first time allow health data derived registries to capture diseases such as Parkinson’s or Alzheimer’s disease; diseases that are primarily diagnosed clinically and thus need to rely on health records. New preventive and therapeutic interventions may be discovered by such efforts and federally funded NIH grants will be encouraged since a registry resource in California would give access to a large and diverse numbers of patients.
California is a state that promotes innovation and is at the forefront of ingenious software development. If the state supports a pilot project for electronic data capture from medical records in service of a Parkinson’s registry this would go a long way to test and encourage such innovative system development.
Thus I urge you to support funding the California Parkinson’s Disease Registry.
(Your name here)
(Your address here)