The Challenges of Developing Registries for Small Patient Advocacy Groups

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
One of the difficulties with recruiting patients for clinical trials for Huntington's disease is that many people at risk for Huntington's disease do not want to be genetically tested.
Uplifting Athletes has announced the six finalists for the 2015 Rare Disease Champion Award that the public can vote for.
Jodie Klein, Communications Director at Rare Cancer Research Foundation (RCRF), Ms Klein talks about the foundation's mission.
Since it often begins with an oral problem, the International Pemphigus & Pemphigoid Foundation (IPPF) has created an awareness campaign that focused on dental students and dentists
Other News
External Resources

Pharmacy Times
Physicians' Education Resource
Physician's Money Digest
Internal Resources

Connect With Us:

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

Copyright Rare Disease Report 2014
Intellisphere, LLC. All Rights Reserved.