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.
Last updated 19 May 2012, 05:53 PM
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
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
Clinical Trials
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.
- Complete the screening form.
- Review the informed consent.
- 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.
Community Leaders
Expert Questions
Ask a question
Start a Community
Don't See Your Condition On Rareshare?
Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.
FAQ
Have questions about rareshare?
Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.
Discussion Forum
anyone help?
Created by dkschwab | Last updated 19 May 2012, 05:53 PM
Our Communities
Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.
FIND YOUR COMMUNITY
Our Resources
Our rare disease resources include e-books and podcasts
Our Community Leaders
Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.