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Pentalogy of Cantrell

What is Pentalogy of Cantrell?

Pentalogy of Cantrell is a rare disorder characterized by: Omphalocele; Anterior diaphragmatic hernia; Sternal cleft; Ectopia cordis; and Intracardiac defect.

 

Pentalogy of Cantrell is a rare disorder characterized by: Omphalocele; Anterior diaphragmatic hernia; Sternal cleft; Ectopia cordis; and Intracardiac defect.
Acknowledgement of Pentalogy of Cantrell has not been added yet.
Prevalence Information of Pentalogy of Cantrell has not been added yet.
Synonyms for Pentalogy of Cantrell has not been added yet.
Cause of Pentalogy of Cantrell has not been added yet.
Symptoms for Pentalogy of Cantrell has not been added yet.
Diagnosis of Pentalogy of Cantrell has not been added yet.
Diagnostic tests of Pentalogy of Cantrell has not been added yet
Treatments of Pentalogy of Cantrell has not been added yet.
Prognosis of Pentalogy of Cantrell has not been added yet.
Tips or Suggestions of Pentalogy of Cantrell has not been added yet.
References of Pentalogy of Cantrell has not been added yet.
anyone help? Created by dkschwab
Last updated 19 May 2012, 05:53 PM

Posted by lopezsalm
19 May 2012, 05:53 PM

Dear dkschwab, Hello. My name is Alyse Lopez-Salm and I am a student doing research in Guatemala. I am staying with a family who has a 2 year old little boy with Pentalogy of Cantrell. The mother only speaks Spanish and an indigenous language- do you know of anyone else with a child with this defect who speaks Spanish I could connect her with? Do you have a child with the defect? She was told her son would not survive an operation and says she has never met anyone or found anyone whose child suffers from this defect. The area is very low in resources, but she luckily comes from a family with enough money to travel to Guatemala City, where the child receives treatment. She lives in the highlands, near Lake Atitlan, and comes from the Tz'Ujutil ethnic group, one of 22 in Guatemala. At any rate, please let me know when you are able if there are any Spanish-speaking mothers in the group, or, if you know of any resources for her. Thank you so much. My personal email is alopezs@emory.edu Sincerely, Alyse Lopez-Salm

Posted by dkschwab
16 Aug 2011, 07:33 PM

Hi, I am looking for more information about children who are growing up with pentology of cantrell.... any help would be great... Thanks

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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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anyone help?

Created by dkschwab | Last updated 19 May 2012, 05:53 PM


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