SCRIPT: Sickle Cell Risk in Pregnancy Tool
The SCRIPT study is developing a new tool to help doctors understand the risk of complications during pregnancy for women with Sickle Cell Disease (SCD). SCD can make pregnancy more challenging for both mother and baby. While some women with SCD have uncomplicated pregnancies, others face serious risks that might require special treatments, which themselves can have side effects. This project will test and improve a calculator designed to predict these risks. By using health information already collected from many women around the world, researchers hope to create a tool that can guide doctors in deciding who needs more intensive care and who might not, ensuring everyone gets the most appropriate support for a healthy pregnancy.
At a glance
What is this study about?
Sickle Cell Disease (SCD) is a condition that affects red blood cells, which carry oxygen around the body. It's more common in people of Black heritage. For pregnant women with SCD, there's a higher chance of complications, such as increased risk for the mother's health and issues with the baby's growth or premature birth. However, it's also true that many women with SCD have perfectly healthy pregnancies without any problems.
Currently, it can be hard for doctors to tell which pregnant women with SCD are most likely to have complications and might benefit from special treatments, and which ones will have an easier time. Some treatments, like blood transfusions, can be helpful but also carry their own risks. This means there's a real need to know who truly needs these extra steps.
This study, called SCRIPT, is about improving a special calculator tool. This tool is designed to work out the chances of a pregnant woman with SCD having complications. Researchers are using existing health records from many different hospitals worldwide to check how well this calculator works. By making it more accurate, the SCRIPT tool aims to help doctors make better decisions about care. This could mean fewer unnecessary treatments for women who don't need them and more targeted support for those who do, ultimately helping both mothers and babies have the best possible outcomes.
Key takeaways
- The SCRIPT study is developing a tool to predict pregnancy risks in Sickle Cell Disease.
- It uses existing patient health records to test and improve this prediction tool.
- The goal is to help doctors decide who needs extra care during pregnancy.
- Participation involves no extra tests, visits, or changes to treatment.
- This research aims to improve future care for pregnant women with Sickle Cell Disease.
- Your privacy is protected, as all data is anonymised.
Who may be eligible?
To be included in this study, you would need to be at least 16 years old. You must have a confirmed diagnosis of Sickle Cell Disease (SCD). This diagnosis needs to be officially proven through specific blood tests or genetic testing, showing you have one of the common types of SCD.
Your pregnancy must involve one baby, and all your antenatal care (check-ups during pregnancy) and the birth itself must have taken place at one of the hospitals participating in this study.
The study will look at information from pregnancies that continued for at least 16 weeks and have full medical records available. If your SCD type can't be confirmed, or if there are gaps in your medical notes, your information wouldn't be suitable for this research.
Could this study suit you?
Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.
- Are you at least 16 years old?
- Do you have a confirmed diagnosis of Sickle Cell Disease (e.g., HbSS, HbSC)?
- Did you have a pregnancy with one baby?
- Did you receive all your pregnancy care and give birth at a hospital taking part in this study?
- Are your medical records for that pregnancy complete?
- Did your pregnancy continue for at least 16 weeks?
What does participation involve?
If you meet the requirements, your stored medical information from your pregnancy and birth will be used for this study. You will not need to attend any extra appointments, have additional tests, or take any new medications. The study will not change how your doctors look after your pregnancy or how your baby is delivered. Your participation involves allowing researchers to anonymously use data from your existing health records to help improve the SCRIPT tool.
Potential risks and benefits
Locations (3)
- Johns Hopkins UniversityVerified postcodeBaltimore, United States
- Providence Health CareVerified postcodeVancouver, Canada
- Centre hospitalier de l'Université de MontréalVerified postcodeMontreal, Canada
Common questions
What is Sickle Cell Disease?
Sickle Cell Disease is an inherited blood condition where red blood cells, which carry oxygen, become stiff and C-shaped, like a sickle. This can cause pain and other health problems.
What is the SCRIPT tool?
The SCRIPT tool is a new calculator aiming to predict the risk of complications during pregnancy for women with Sickle Cell Disease, helping doctors tailor their care.
Will my medical care change if I'm part of this study?
No, this study only uses existing records. It will not change your current or future medical treatment or how your doctors care for you.
Is my personal information kept private?
Yes, all your personal details will be kept private. The study will use 'anonymised' information, meaning your name and other identifying details will be removed so you cannot be recognised.
Why is this study important?
This study is important because it could lead to better, more personalised care for pregnant women with Sickle Cell Disease, helping them and their babies have healthier pregnancies.
How to find out more
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
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