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Apert Syndrome

What is Apert Syndrome?

Apert Syndrome is a congenital disorder affecting the first branchial arch.

 

Apert Syndrome is a congenital disorder affecting the first branchial arch.
Acknowledgement of Apert Syndrome has not been added yet.
1.25http://www.orpha.net
Synonyms for Apert Syndrome has not been added yet.
Apert Syndrome may be inherited from a parent or may be a new genetic mutation.
Name Description
Cranial malformations Cranial malformations
Cranial synostosis Cranial synostosis
Prominent forehead Prominent forehead
Flat posterior skull Flat posterior skull
Low-set ears Low-set ears
Syndactyly of the hands and feet Syndactyly of the hands and feet
Diagnosis of Apert Syndrome has not been added yet.
Diagnostic tests of Apert Syndrome has not been added yet
Treatments of Apert Syndrome has not been added yet.
Prognosis of Apert Syndrome has not been added yet.
Tips or Suggestions of Apert Syndrome has not been added yet.
References of Apert Syndrome has not been added yet.
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Community Resources
Title Description Date Link
Teeter's Page

An online resource for families affected by Apert syndrome.

03/20/2017

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.

Community Leaders

 

Expert Questions

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Community User List

My daughter Catalina was born with Apert syndrome. She is now 10 years old and doing fine,

 

 

We live in Argentina, but all her surgeries (six at the moment) were done in the US.

 

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