Last week the Melanoma Research Foundation updated their web page about the CURE OM Patient Registry.
Many visitors to the page were a little shocked to discover that multi-year funding has been budgeted at approximately $300,000 per year!
I did a little research with folks I am affiliated with, and learned about NORD’s IAMRARE™ Registry platform.
Here is a link to the informational flyer:
Why would a charity take over the responsibility for a rare disease patient registry, go on to pretty much exhaust the 100K they raised to launch the program, then plan a system costing $300,000 a year, when they could instead, use a platform which already exists through NORD which would cost closer to $40,000 a year?