Please join us for the 2nd Annual Sanford Rare Disease Symposium

Saturday February 25th, 2012

7:45am-5:30pm

Sanford Center

2301 E 60th Street N,

Sioux Falls, SD 57104

Important Links

• Symposium Agenda
• Map & Directions to the Sanford Center

General Public & Healthcare Providers Should Register Now!  Deadline is February 17th, 2012

• For General Public (both in person and from a distance), click here to register.
• For Healthcare Providers to register for FREE CMEs, please email nikki.terveer@sanfordhealth.org.

Problems Submitting Your Registration Form?

• PC users – Click here for instructions.
• Mac Users – Print screen (Apple + Shift + 3) and copy in an email addressed to cords@sanfordhealth.org.

Email cords@sanfordhealth.org, with any questions or concern.

Coordination of  Rare Diseases at Sanford (CoRDS)

Background

The Coordination of Rare Diseases at Sanford (CoRDS) registry is a national disease registry that includes all rare diseases. The CoRDS registry is headquartered at Sanford Research in Sioux Falls, South Dakota and is supervised by Dr. David Pearce and Dr. Chun-Hung Chan and managed by Liz Donohue and Lauren Beaumont.

Purpose
Research into rare diseases is often limited by many factors: lack of awareness, lack of information and the relatively small number of suitable participants for clinical trials to effectively test new treatments. Treatments for many rare diseases are symptomatic and many rare diseases in some cases may in fact share similar symptoms. Currently, patient registries are organized independently and patient information is thus kept in separate databases, making it difficult to integrate data. Establishing a central registry of persons with confirmed diagnosis of every rare disease is an innovative way to accelerate rare disease research efforts. CoRDS provides an opportunity to perform a comparative analysis across different rare diseases which may help scientists understand the disease better.

Goal
To work with patient advocacy organizations, healthcare providers, researchers and patients to send information to potential participants to create a resource that links scientists conducting research studies with the patient interested in participating in the trial which will ultimately accelerate rare disease research.

Enrollment:

1. Participant completes CoRDS postcard and sends to CoRDS personnel
2. CoRDS personnel contact participant and conducts a brief interview to gather information to send the  CoRDS consent form and CoRDS questionnaire
3. CoRDS participants will read and sign the consent form, complete the 8 item questionnaire, and send the forms back to CoRDS personnel.
4. When CoRDS personnel receive the information, they will enter the information in the CoRDS database.
5. CoRDS personnel will contact the participant annually to update the participant’s information and additionally if a researcher would like to contact them regarding a research study.

*Participants are encouraged to contact CoRDS personnel anytime during the enrollment process if they have any questions

Want to become a CoRDS Partner or Enroll in the Registry?
Click on the Organization or Participant link to find all the information you need to become a CoRDS partner and to enroll in the Registry.

Have Questions? Please Contact:
Liz Donohue  |  605.312.6413
Lauren Beaumont  |  605.312.6423

Mailing Address
Coordination of Rare Diseases at Sanford
Sanford Center
2301 E 60th Street North
Sioux Falls, SD 57104
E-mail| Cords@sanfordhealth.org

Source:
http://www.sanfordresearch.org/cords/