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Encephalocele

What is Encephalocele?

Encephaloceleis a disorder characterized by protrusions of the brain through openings in the skull.

 

Encephaloceleis a disorder characterized by protrusions of the brain through openings in the skull.
Acknowledgement of Encephalocele has not been added yet.
Prevalence Information of Encephalocele has not been added yet.
Synonyms for Encephalocele has not been added yet.
Cause of Encephalocele has not been added yet.
Symptoms for Encephalocele has not been added yet.
Diagnosis of Encephalocele has not been added yet.
Diagnostic tests of Encephalocele has not been added yet
Treatments of Encephalocele has not been added yet.
Prognosis of Encephalocele has not been added yet.
Tips or Suggestions of Encephalocele has not been added yet.
References of Encephalocele has not been added yet.
Hello Created by svandeurzen
Last updated 2 Apr 2012, 03:17 AM

Posted by svandeurzen
2 Apr 2012, 03:17 AM

Hi, I'm Sara & the mother to a 4mo old that has now had 3 surgeries related to her Encephalocele. I'm just wondering more about other parent of kids with this diagnosis & how your children are doing/ progressing.

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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 am a wife & mother of 2. My oldest is 2.5 years (Mason) & Violet is 4mo. Violet was diagnosed with Encephalocele during my 20 week ultrasound. I'm just looking for other parents that are going...
I am a soon to be second time mom. We found out the day before Thanksgiving that our son who is to be born in May has encepholacele. Needless to say there isn't much information out there and I...
Born with Occipital Encephalocele and Hydrocephalus, Shunted.

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Hello

Created by svandeurzen | Last updated 2 Apr 2012, 03:17 AM


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