For many people, pregnancy is equally exciting and terrifying. On the one hand, they grow a tiny person in their body, which is very cool. The cultivation of a tiny person also means many changes and decisions that you can make through your health and health of your unborn child.
Considerations become even more complicated if they live with a chronic illness. Many chronic diseases require a lifelong treatment, and pregnancy can affect the type of medication that you take – and whether you can take medication at all.
Pregnancy registers come into play here.
Read: Family planning with a chronic state of health >>
What is a pregnancy register?
Registration is a database that collects information about people with certain health conditions. The data can be used to improve patient care, public health programs and research as a whole.
A pregnancy register is no different. “Pregnancy register … often focus on a certain treatment or a number of treatments that could be used for an underlying disease,” said Christina Chambers, Ph.D., MPH, deputy director of the Altman Clinical & Translational Research Institute at the University of California, San Diego.
The information collected during a pregnancy register can be life-changing for people with chronic illness-especially people with multiple sclerosis (MS).
“People with chronic illnesses such as MS present a number of challenges in relation to the best treatment and the best health results. And then when it comes to pregnancy, there are a number of other questions, ”said Chambers.
Read: Family planning with a chronic state of health >>
Pregnancy register and MS
MS is an autoimmune disease that affects your brain and spinal cord. Most women and people who were assigned to women at birth (AFB) are diagnosed with MS in their reproductive years. But there is not much research when it comes to MS and pregnancy. This is due to the fact that in the past disease modifier therapy (DMT) studies included pregnant people. So if they were inscribed in an attempt, they had to stop when they got pregnant.
For a long time, people with MS have been instructed not to get pregnant at all because treatments could possibly harm the unborn child. It was only in 2002 that the FDA asked the pharmaceutical manufacturers to create pregnancy register for people with MS. The registrations have been set up to collect information about the effects of DMTS before, during and after pregnancy. The registrations also lead to recording the results, including miscarriages and birth defects. In other words, you collect information to find out whether medication for pregnancy is safe.
“It is one of the reasons why we carry out pregnancy register studies – people who either find out that they are pregnant or take the medication or take the medication or take in a future pregnancy can feel relatively calmed down that there is no evidence of this [harm]«, Said Chambers.
We now know that people with MS can have healthy pregnancies. In fact, studies show that the rates of birth defects and pregnancy or delivery complications for people with MS are roughly the same compared to people without MS.
Nevertheless, there is little information about the effects of DMTS and other medication for pregnancy for people with MS. The lack of research has left a large gap in the data, and many of the newer drugs are still being examined to determine safety and side effects during pregnancy.
Read: FAQs about delivery, breastfeeding and postpartum supply with multiple sclerosis >>
How do you register for a register
Entry to registration can help fill the information. Chambers found that different registers have different requirements. Some registers only collect reporting from health service providers (HCPS). Others use the pregnant person and information from the provider. “All [registries] That we – and many others – also consider the mother than the main source, ”said Chambers.
How and when can register can also vary depending on registration. In many cases, a neurologist or HCP refers the person to a registration. From there it is to decide whether it fits well.
Online resources such as Mothertobaby, MSBase Registry and the National Multiple Sclerosis Society can also help connect people with open registers. Drug manufacturers can also promote online pregnancy register.
Chambers said it was important to find out everything you can do early in the registration and ask questions about the time commitment – some studies can compete for years – and what you expect during this time.
Pregnancy register and privacy
It is also important to know who your information is passed on. Privacy and confidentiality are valid concerns if you share important details such as medical records and personal information. Part of the consent procedure includes how confidentiality is protected, how the information is saved and that no identifiable information is shared outside the employees who work on the study. “Nobody could say: ‘Mrs. So and so in the study part ‘-that would not happen, ”said Chambers. “[The participant] It can be sure that she will not see her picture or name in a paper and that her identity is protected during the entire study. “
The only exception is if someone wanted to be part of a certificate after participating in a registration. But that’s again due to the person in the study.
Women help women
Pregnancy registers offer the opportunity to help other people with MS to make sound decisions about pregnancy and treatment. The information collected can even influence decisions long before pregnancy is confirmed. It’s pretty powerful stuff. “We hear that over and over again … people who say I do it because I wish I knew it or I wish I had this information, so I would like to make sure that the next person has it,” said Chambers. “The mothers do it – they are incredible. You contribute your time and personal information. It’s a really lovable thing you do. “
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