WHO CAN PARTICIPATE?
Any person with a confirmed Fabry, Gaucher, Pompe, or MPS1 diagnosis is eligible to participate, regardless of disease type, treatment status or treatment choice.
HOW CAN I PARTICIPATE?
Data Registry Services is committed to making registry participation as easy as possible for all interested individuals. There is no cost to you. If you are receiving treatment, you do not have to switch physicians and it does not influence your current treatment in any way. Reach out to us directly and we will facilitate the process. It is a simple and free process. We will send you an informational packet and schedule a short phone call. With a couple of signatures and a stop at the mailbox you will be enrolled in the appropriate registry and you will be contributing to a better understanding and better long term management and treatment of your disease.
IS MY INFORMATION PRIVATE/SECURE?
Absolutely! Data Registry Services utilizes the most up to date HIPPA compliant cloud server software available. Additionally, all data entered into the medical registry is de-identified. You name and personal information is not associated with your individual data in the registry.
ADDITIONAL BENEFITS
Data Registry Services is more than a data collection company. We are committed to doing everything we can to ensure that your physician is following the scheduled assessments recommended by the registry. Consistent and timely monitoring of your individual testing results by your treating physician is essential to your long term health and Data Registry Services wants to help ensure that you are being appropriately monitored by your physician. If we see that your not up to date with your registry recommended minimally scheduled assessments, we will act as the squeaky wheel and remind your physicians office that you need to be scheduled for the appropriate appointments. We are serious about patient advocacy.
Data Registry Services also realizes that keeping track of all your past medical records can be almost impossible. We provide you full access to all available historical and current personal medical records in one place. This can be an especially useful resource when you consider the number of different institutions and physicians that have been involved in your long term care.
Data Registry Services also realizes that keeping track of all your past medical records can be almost impossible. We provide you full access to all available historical and current personal medical records in one place. This can be an especially useful resource when you consider the number of different institutions and physicians that have been involved in your long term care.
DATA REGISTRY SERVICES, LLC - PITTSBURGH, PA - CONTACT US
