TSC-LAM Registry
A registry to help improve care of women with tsc and Lam
Too little is known about the complications during pregnancy for women with TSC and LAM. Specifically in TSC, most TSC focused care occurs in children’s hospitals that don’t have obstetrics care. To solve this lack of knowledge we first did a survey of providers (publication coming) and now are look to survey women with TSC or LAM who are also pregnant to understand provider practices and patient risks. We aim for the results of this registry to inform best practice guidelines for TSC and LAM.
A registry to Understand the risk of mTOR inhibitors in pregnancy
There is a wide range of practices on prescribing mTOR inhibitors during pregnancy. Are there risks to the mother or baby while on mTOR inhibitors? This registry will help us learn about if there are risks and how often they occur. With that information, we can give better advice to women during pregnancy about their own health risks while also being prepared to provide prenatal treatment if the need arises.
A registry to determine the Best imaging to predict fetal TSC
An infant born to a mother or father with TSC has a 50% chance of having TSC. However, it is still unknown what imaging may help us predict fetal TSC. Fetal ultrasounds, fetal echocardiograms, and fetal MRIs are all used. By surveying women at risk of having children with TSC we hope to gain knowledge in this area. We believe if we know the bests tests and when to order them, then we can be better prepared to treat infants early in their TSC disease course.
want to be involved?
Email:
tsclamregistry@cchmc.org
or
david.ritter@cchmc.org
Phone
(513)636-0072
Have clinical questions?
Contact our clinical team: