The Challenges of Developing Registries for Small Patient Advocacy Groups

rarediseasereport
Published Online: Thursday, Apr 18, 2013

 

PatientCrossroads is a for profit organization that helps disease organizations -- be they patient advocacy groups, pharmaceutical companies, or medical researchers -- to become Registry Partners in a new shared, open-access patient registry able to collect data on any disease, from the most rare to more common diseases.

PatientCrossroads' strong roots in the rare disease community have helped numerous diseases create registries that can be used interchangeably by others to ensure the data is of use to all parties.

In this exclusive interview with Rare Disease Report, the CEO of PatientCrossroads, Kyle Brown talks about some of the challenges that rare disease advocacy groups have in developing registries and how programs like CONNECT - a collaboration between PatientCrossroads and Novartis – can help smaller patient groups share their information

Related Articles
In a perfect world, there would be a single worldwide patient registry for each of the 7,000 known diseases.
The National Organization of Rare Disorders (NORD) has announced the people, organizations, and companies being given awards at the upcoming Portrait of Courage Gala (May 19, 2015 in Washington DC).
“Not every doctor would go to such lengths to help a patient; thankfully, my doctor did.”
The video project will be designed to allow adaptation to different patient organizations to educate people about lysosomal diseases around the world.
External Resources

MJH Associates
AJMC
Cure
HCPLive
OncLive
Pharmacy Times
Specialty Pharmacy Times
Physicians' Education Resource
Internal Resources

Medicine
Advocacy
Business/Regulratory
Events
Conferences
Connect With Us:

About Us
Advertise
Careers
Contact Us
Privacy Policy
Sponsor
Terms and Conditions
Intellisphere, LLC
666 Plainsboro Road
Building 300
Plainsboro, NJ 08536
P: 609-716-7777
F: 609-716-4747

Copyright Rare Disease Report 2015
Intellisphere, LLC. All Rights Reserved.