Allied Cleft & Craniofacial Quality-Improvement and Research Network (ACCQUIREnet)
The ACCQUIREnet project brings together teams of doctors and nurses from different hospitals who treat children born with a cleft lip and/or palate. A cleft is a gap in the lip or the roof of the mouth that happens when a baby is developing. These teams collect information about the treatments children receive and how well they recover. They look at things like how surgeries go, how speech develops, and how children feel about their care. By comparing this information across different hospitals, the teams can learn from each other. This helps them find ways to improve the care they give, making sure children with clefts get the best possible results.
At a glance
What is this study about?
Imagine your child has a cleft lip or palate. You'd want them to receive the very best care, right? That's exactly what the Allied Cleft & Craniofacial Quality-Improvement and Research Network (ACCQUIREnet) is all about. It's not a new treatment or a medicine, but rather a way for different specialist teams across the country to work together and make sure children with clefts get top-notch care.
Here’s how it works: When a child with a cleft receives treatment at a hospital that is part of ACCQUIREnet, the doctors and nurses collect information. This includes details about their surgeries (like cleft lip repair or palate repair), speech therapy, hearing support, and even how the child feels about their results. This information is gathered systematically and safely, ensuring everyone’s privacy is protected. It’s a bit like keeping a very detailed diary of how treatments are working.
The main goal of ACCQUIREnet is two-fold. Firstly, it allows each hospital team to regularly look at their own results and see where they are doing well and where they could make improvements. Secondly, because all the hospitals collect information in the same way, they can compare their results with others. This helps them identify the most effective treatments and care approaches. By sharing and learning from each other, they can continuously improve the care for all children with clefts, helping them grow up feeling confident and healthy.
Key takeaways
- This project aims to improve care for children with cleft lip and/or palate.
- It involves specialist teams sharing information about patient outcomes.
- Your child's routine care will not change.
- No new treatments or tests are involved.
- Information is collected to find the best ways to treat clefts.
- Patient privacy is always protected.
Who may be eligible?
This project is for children and young people from birth up to 22 years old who have certain types of clefts. This includes those with a cleft in their lip, a cleft in the roof of their mouth (palate), or both. It covers clefts that are on one side or both sides of the face, and even those that might be hidden.
However, it's not for everyone. If a child has very rare or unusual types of facial clefts, sometimes called 'atypical' clefts, they wouldn't be included in this particular project. The study is open to both boys and girls.
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.
- Is your child 22 years old or younger?
- Does your child have a cleft lip, cleft palate, or both?
- Is your child's cleft a common type (not a very rare facial cleft)?
- Is your child receiving care at a hospital participating in ACCQUIREnet?
What does participation involve?
If your child's hospital is part of ACCQUIREnet, they will simply collect information about the standard care your child receives. This means your child will continue to have their regular appointments, treatments, and follow-ups as advised by their medical team. There are no extra hospital visits, additional medicines, or new assessments specifically for this project. The information collected includes details about surgeries (like cleft lip or palate repair), speech therapy, hearing support, and sometimes how your child feels about their care. This information is part of the routine follow-up that helps their doctors monitor their progress. Participation doesn't involve any changes to your child's usual treatment plan or routine; it just involves their medical team systematically recording their care journey.
Potential risks and benefits
Locations (11)
- University of Florida - Shands HospitalVerified postcodeGainesville, United States
- Joe DiMaggio Children's HospitalVerified postcodeHollywood, United States
- Orlando Health - Arnold Palmer Hospital for ChildrenVerified postcodeOrlando, United States
- Johns Hopkins - All Children's Hospital (JHACH)Verified postcodeSt. Petersburg, United States
- Maine Medical CenterVerified postcodePortland, United States
- Harvard University - Boston Children's Hospital (BCH)Verified postcodeBoston, United States
- Washington University - St. Louis Children's Hospital (WUSTL)Verified postcodeSt Louis, United States
- Duke University - Duke Children's Hospital & Health CenterVerified postcodeDurham, United States
- Wake Forest University - Brenner Children's HospitalVerified postcodeWinston-Salem, United States
- University of Texas at Houston - Children's Memorial Hermann HospitalVerified postcodeHouston, United States
- Dalhousie University - IWK Health CentreVerified postcodeHalifax, Canada
Common questions
What is a cleft lip or palate?
A cleft lip is a gap in a baby's upper lip, and a cleft palate is a gap in the roof of their mouth. These happen if parts of the face don't join together properly during pregnancy.
Will my child get different treatment if they take part?
No, your child will receive the same standard care and treatments they would normally get. This project simply collects information about that care.
Is my child's information kept private?
Yes, all personal information is handled with great care and kept confidential to protect your child's privacy.
Do I have to do anything extra if my child is in the project?
No, you don't need to do anything extra. This project involves the medical teams collecting data during routine appointments and treatments.
How does this project help children with clefts?
By collecting and sharing information, medical teams can learn which treatments work best, helping to improve care for all children with clefts now and in the future.
How to find out more
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
Discussion
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