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
This week’s bucket list is for Zach Parnaby. He is a 20 month old boy with Krabbe disease; an inherited disorder that destroys the myelin surrounding nerve cells.
A global competition to award rare disease research has been announced by the Rare Genomics Institute (RGI). The BeHEARD (Helping Empower and Accelerate Research Discoveries) challenge is a global competition to award rare diseases research accomplishments.
To help kick off the 2-day meeting, there will also be an appreciation dinner on March 15th at the Yards Brewing Company.
On March 3rd, there is an opportunity for people to donate to 1 of over 80 non-profit rare disease organizations with ‘Give RARE’.
Other News
External Resources

MJH Associates
Pharmacy Times
Specialty Pharmacy Times
Physicians' Education Resource
Internal Resources

Connect With Us:

About Us
Contact Us
Privacy Policy
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.