Persistent Fetal Vasculature Syndrome
What is Persistent Fetal Vasculature Syndrome?
Persistent Fetal Vasculature Syndrome is a rare disorder in which the lens of the eye is opaque and there is malformation of the retina.
Last updated 24 Jun 2011, 11:55 PM
24 Jun 2011, 11:55 PM
Good Evening, My daughter Arika was diagnosed at 3 weeks old. She is now 9 months and has also gone thru 2 surgeries, one on each eye for cataracts and glaucoma. Arika has also been found to have Microcephly, Diffuse Brain Atrophy, Hearing loss (if not complete), Viscular Hyperalgesia, as well as muscle problems. She takes nothing by mouth, everything thru a Mic-Key button. Does your daughter have any other diagnosis?
21 Jun 2011, 09:13 PM
Hello, My name is Baylee. My daughter was diagnosed with PFV Syndrome when she was 2 months old. She is now 5 months and has undergone 2 surgeries to remove a cataract from her right eye.
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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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