For many people, pregnancy is both exciting and scary. On the one hand, you are growing a little human in your body, which is very great. But cultivating a small human also means many changes and decisions to make about his health and the health of his child (s).
Any consideration becomes even more complicated if you live with chronic disease. Many chronic conditions require treatment for a lifetime, and pregnancy can affect the type of medication you take, and if you can even take medications.
This is where pregnancy records enter.
Read: Family planning with a chronic health condition >>
What is a pregnancy record?
A record is a database that collects information about people with specific health conditions. Data can be used to help improve patient care, public health programs and research in general.
A pregnancy record is no different. «The pregnancy records … They often focus on observing a particular treatment or a set of treatments that could be used for an underlying condition,» said Christina Chambers, Ph.D., MPH, associate director of the Institute for Clinical and Translation Institute Altman of the University of California, San Diego.
The information collected during a pregnancy record can change the lives of people living with chronic disease, especially people with multiple sclerosis (EM).
“People with chronic conditions such as EM have a series of challenges in terms of the best treatment and provide the best health results. And then, when it comes to pregnancy, there is a complete set of other questions that arise, ”said Chambers.
Read: Family planning with a chronic health condition >>
Pregnancy and em records
EM is an autoimmune condition that affects its brain and spinal cord. Most women and people assigned to women at birth (Afab) are diagnosed with EM in their reproductive years. But there is not much research when it comes to EM and pregnancy. This is because, in the past, Disease modifying therapy (DMT) The essays did not include pregnant people. So, if I was registered in a trial, I had to quit smoking if it became pregnant.
For a long time, people with EM were told that they were not pregnant because the treatments could damage the unborn child. It was not until 2002 that the FDA required that drug manufacturers create pregnancy records for people with EM. The records were established to help collect information about the effect of the DMT before, during and after pregnancy. Records also maintain a record of results, including spontaneous abortions and birth defects. In other words, they collect information to find out if medications are safe for pregnancy.
«It is one of the reasons why we do pregnancy registration studies, so people who discover that they are pregnant or take the drug or were considering taking it in the future pregnancy can feel relatively reassured that there is no evidence to suggest suggesting [harm]»Chambers said.
Now we know that people with ES can have healthy pregnancies. In fact, studies Show that birth defect rates and pregnancy or childbirth complications are almost the same for people with EM compared to people without EM.
Even so, there is little information on the effects of DMT and other medications in pregnancy for people with EM. The lack of research has left a great gap in the data, and many of the newest medications are still being investigated to determine safety and side effects during pregnancy.
Read: frequent questions about childbirth, breastfeeding and postpartum attention with multiple sclerosis >>
How to register for registration
Uniting on a record can help fill the voids in the information. Chambers said that different records have different requirements. Some records only collect reports from medical care suppliers (HCP). Others use reports from the pregnant person and supplier information. «All [registries] What we do, and many others also, we consider the mother the main source, ”said Chambers.
How and when to register can also vary by registration. In many cases, a neurologist or PS HCP will send the person to a record. From there, it depends on that person to decide if it is a good adjustment.
Online resources such as MOTHERBABY, MSBASE registration and the National Society of Multiple Sclerosis It can also help connect people to open records. Drug manufacturers can also promote online pregnancy records.
Chambers said it is important to learn everything I can at the beginning of the registration and ask questions about the commitment of time (some studies can continue for years, and what is expected of you during that time.
Pregnancy and privacy records
It is also important to know who your information will be shared with. Privacy and confidentiality are valid concerns when you share important details such as medical records and personal information. Part of the consent process includes how confidentiality is being protected, how the information is stored and that identifiable information is not shared outside the personnel working in the study. «Then no one could go to say: ‘Mrs. Tal and such participated in the studio,’ that would not happen,» said Chambers. «[The participant] You can feel safe that you will not see your photo or your name in an article and that your identity is protected throughout the study. «
The only exception is whether someone wanted to be part of a testimony after participating in a registry. But, again, that depends on the person in the study.
Women who help women
Pregnancy records provide the opportunity to help other people with EM to make educated decisions about pregnancy and treatment. The information collected can even affect decisions taken long before confirming a pregnancy. That is quite powerful. «We listen to that again and again … people say I’m doing this because I would like to have known or wanted to have this information, so I want to make sure the next person has it,» said Chambers. “The moms who do so are incredible. They are contributing to their time and personal information. It is a really friendly thing they do. «
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