Amniotic Band Syndrome
What is Amniotic Band Syndrome?
Amniotic band syndrome is a congenital syndrome. The associated symptoms of this syndrome are highly variable. There are different causes of amniotic band syndrome. An affected baby is born with a variety of abnormalities. The exact cause is unknown and controversial.
There are different theories as to the cause of this disorder. One theory states that the outer layer of the amniotic sac is damaged resulting in strands (or bands) of amniotic tissue that can wrapped around parts of the developing fetus constricting the affected area and cutting off blood flow. A different theory suggests that blood flow is hindered or interrupted in the developing fetus for unknown reasons, depriving affected areas of the nutrients a fetus needs.
There are many different potentially symptoms associated with amniotic band syndrome. Some infant are only mildly affected, while others experience severe birth defects or life-threatening complications. No two infants with this syndrome are alike; it is a highly variable disorder.
https://amnioticbandsyndrome.com/
https://rarediseases.org/rare-diseases/amniotic-band-syndrome/
https://rarediseases.info.nih.gov/diseases/429/amniotic-band-syndrome
Amniotic band syndrome is a congenital syndrome. The associated symptoms of this syndrome are highly variable. There are different causes of amniotic band syndrome. An affected baby is born with a variety of abnormalities. The exact cause is unknown and controversial.
There are different theories as to the cause of this disorder. One theory states that the outer layer of the amniotic sac is damaged resulting in strands (or bands) of amniotic tissue that can wrapped around parts of the developing fetus constricting the affected area and cutting off blood flow. A different theory suggests that blood flow is hindered or interrupted in the developing fetus for unknown reasons, depriving affected areas of the nutrients a fetus needs.
There are many different potentially symptoms associated with amniotic band syndrome. Some infant are only mildly affected, while others experience severe birth defects or life-threatening complications. No two infants with this syndrome are alike; it is a highly variable disorder.
https://amnioticbandsyndrome.com/
https://rarediseases.org/rare-diseases/amniotic-band-syndrome/
https://rarediseases.info.nih.gov/diseases/429/amniotic-band-syndrome
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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.
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