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Cystinuria

What is Cystinuria?

Cystinuria is a rare genetic disorder characterized by the formation of cystine stones in the kidneys, ureter, and bladder.

 

 

 

Cystinuria is a rare genetic disorder characterized by the formation of cystine stones in the kidneys, ureter, and bladder.

 

 

Acknowledgement of Cystinuria has not been added yet.
14.0http://www.orpha.net
Synonyms for Cystinuria has not been added yet.
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New to Cystinuria? Created by mlewis
Last updated 10 Feb 2010, 09:37 PM

Posted by mlewis
10 Feb 2010, 09:37 PM

The International Cystinuria Foundation (ICF) is a 501(c)3 nonprofit organization dedicated to the advancement of the cystinuric community through education and communication. Please visit the ICF website at www.cystinuria.org and the community forums at www.cystinuria.org/forums for more details. Additionally, the Cystinuria Support Network (CSN) is available as a patient-owned support group. The CSN can be found at www.cystinuria.com. Kind Regards, Matthew Lewis President, ICF Member, CSN

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Clinical Trials


Cords registry

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

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I'm 31 years old and was diagnosed 5 months ago with cystinuria and a tumor on my right kidney.
Hi, I'm a 21 year old female and have been in and out of hospital for the last 7 years. I have a Cystinuria condition and unfortunately it is very rare here in Malta, we have around 27 patients...
Hi

 

I am a 40 yr old mum with one teenage boy from the UK. 2 yrs ago i was diagnosed with Cystinuria. I had had problems 2yrs prior to my diagnosis and it was only due to a surgical mistake...
Co-founder and President of the International Cystinuria Foundation.

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New to Cystinuria?

Created by mlewis | Last updated 10 Feb 2010, 09:37 PM


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