There are a lot of registries for rare diseases out there. Some are well organized. Some are not. But even the most well organized registries may not be measuring the right outcomes that can be shared or used effectively. One group trying to change that is the Coordination of Rare Diseases at Sanford (CoRDS). The goal of CoRDS is to create a central resource of data on rare diseases to help accelerate research into rare diseases.
CoRDS is headquartered in the Sanford Children’s Health Research Center at Sanford Research in Sioux Falls, SD and supervised by David Pearce, PhD and directed by Liz Wheeler.
Recently we conducted a interview with Liz about CoRDS and their recent collaboration with the Batten Disease Society of America.
RDR: What is CoRDS and why was it established?
Liz Wheeler: CoRDS was established to advance research into rare diseases by creating a central resource of rare disease data and a mechanism to connect patients with researchers who are conducting rare disease research.
Why are registries important for rare diseases?
There is limited information on the approximately 6500 rare diseases that are known. Rare diseases in the US are defined as a disease affecting less than 200,000 people in the US and other countries around the world have similar definitions. Since rare diseases are "rare" it it is very difficult to catalog information on each diseases. It is not likely that rare diseases are often represented in one geographic area or that individuals with the same disease would be able to go to the same institution. A registry offers the potential to catalog important contact and clinical information. Best estimates are that 20% of patient advocacy groups have a registry [1]. Registries require a lot of time, planning and money to establish and maintain them, however, they can provide a very powerful tool to help understand these rare diseases better and also to connect patients interested in research with researchers to who are conducting the studies.
More information on the value of Patient Registries can be found at theGRDR website.
Why should a person with a rare disease join CoRDS instead of another patient registry?
CoRDS is a central registry for all rare diseases. Having a central repository for rare disease data will allow researchers to do a comparative analysis across rare diseases.
How many rare disease patients have enrolled in CoRDS and how may rare diseases? What are the top 5 diseases currently enrolled?
Here are some CoRDS metrics as of 8/13/2014
- 1630 Participants
- 970 additional Participants in Screening
- 279 Unique Rare Diseases
- 50 US States and 23 Countries
The top 5 rare diseases in the CoRDS Registry as of 8/13/2014 are:
- Behcet's Disease
- Friedreich's Ataxia
- Klippel Feil Syndrome
- Spinocerebellar Ataxia Type 3
- Spinocerebeallar Ataxia – Unknown Type
More information is available on our Metrics page http://www.sanfordresearch.org/cords/aboutcords/cordsmetrics/
full article at http://www.raredr.com/articles/CoRDS