Patient Powered Registry - Get Connected — NYSSCAN - New York Sickle Cell Advocacy Network Inc

NYSSCAN Gets Connected!

NYSSCAN & SCDAA Are Proud To Announce The New Patient Powered Registry, Get Connected!

Get Connected is a National patient-powered registry that allows those with Sickle Cell Disease to enter their medical history online, in the secure Get Connected database. By doing so, the patient has access to their information, no matter where they are in the country. This lets them, or a hospital that is treating them, have up-to-date medical data. Other benefits of this registry include newsletters, community forums, and other Sickle Cell specific information.

By maintaining a national patient registry where all patients can actively stay up-to-date on the sickle cell community and maintain their medical histories, the community will become much stronger and unified in their efforts to build better health care solutions for patients across the country. In addition, Get Connected will allow SCDAA to glean aggregate level data from patient entries, including gaining an overview of how many individuals currently living with sickle cell disease reside in the United States. This pertinent data can then be utilized to request substantial funding support for research and treatment of patients with sickle cell disease. This brings us another leap closer to finding a cure. (SCDAA)

The www.GetConnectedscd.org registry is FREE and confidential. Once you register you will receive an approval email link that allows you to go back into the registry and complete your profile. You can connect with your local SCDAA NY Chapter, The New York State Sickle Cell Advocacy Network (NYSSCAN) priority for resources and programs to those who have completed their profiles in the Get Connected Registry.

We are very excited about being pioneers with the new program, Get Connected. We’re pleased to work with our CBO partner, Ms. Donnette Carroll, President of the Sickle Cell Thalassemia Patients Network (SCTPN) and her dedicated staff. Together with the Sickle Cell Disease Association of America (SCDAA), we will better educate our Sickle Cell families with access to more services, better care options, and hope for a cure.