Ongoing Research Studies

Purpose: Some kids with hand or arm differences don’t return for follow-up care, which can lead to missed treatments and worse results for how their hands work or look. Since there aren’t clear guidelines for follow-up, care can vary a lot. The aim of this study is to see how follow-up recommendations differ between surgeons from the CoULD Registry and to find out how often kids actually return for follow-up visits and where there may be gaps in care.

Purpose: The aim of this study is to learn more about how kids with congenital differences in their hands or arms are doing. We want to understand things like how their arms work, if they have pain, how they feel emotionally, and how things are going with friends. We’re also looking at whether kids with differences that are easier to see feel or function differently than those with differences that aren’t as noticeable.

Purpose: This is a small pilot study to test if we can use artificial intelligence (AI)—to help recognize and sort different types of radial polydactyly (a condition where a child is born with an extra thumb). The computer will look at X-rays and basic information from patients in the CoULD registry. We want to see how well the computer does compared to expert pediatric hand surgeons when it comes to figuring out the type of difference each child has.

Purpose: This study aims to find the most common shapes of the wrist bones (carpal bones) in children with radial longitudinal deficiency (RLD), a condition in which the radius bone in the forearm is short or missing). It also seeks to understand how the severity of these wrist differences is related to the severity of thumb underdevelopment (thumb hypoplasia) and RLD.

Purpose: Radial longitudinal deficiency (RLD) is a condition where children are born with a short or missing radius bone in their arm. There is no agreement among pediatric hand surgeons on the best surgical treatment for the wrist joint in RLD. While specific surgeries are often used, there is variation in the types of surgeries performed. This study aims to identify which surgeries are most commonly used to treat RLD and how they relate to the type of RLD and the patient’s age.

Purpose: This study will compare the outcomes of children with syndactyly (webbed fingers) who had surgery using a skin graft substitute versus a full-thickness skin graft. The study has two parts: first, it will use existing data from the CoULD registry, and second, researchers will ask families for more information. This includes parent-taken photos of the child’s hand for a scar assessment and questions about pain and how well the child’s hand works. Photos will be reviewed by doctors using a scar scale, and families may need to sign a new consent form for this part of the study.

Purpose: Congenital radioulnar synostosis (CRUS) is a rare condition where the two bones in the forearm, the radius and ulna, are abnormally fused, limiting the ability to rotate the forearm. This fusion can vary in severity. Some children are able to adjust by moving their shoulder or wrist, while others have significant difficulty performing everyday activities. For children with severe limitations, surgery called rotational osteotomy is often needed. There are different surgical techniques, but the outcomes from these surgeries are not well understood across many different centers. This study aims to evaluate the safety, effectiveness, and impact on the quality of life for children who undergo rotational osteotomy using data from the CoULD registry.

Purpose: This study has 2 goals: 1) to understand how children with congenital arm differences stay active and play sports, and 2) to determine what the barriers or obstacles are to sports participation and physical activity. 

Purpose: This study will look at children classified with having phocomelia (a rare condition where parts of the arm are missing) to see if their condition can be considered a severe form of other conditions, like radial longitudinal deficiency (part or all radius bone is missing) or ulnar longitudinal deficiency (part or all ulna bone is missing). We hope to understand whether phocomelia is truly a separate condition or just a more severe version of these other differences.

Purpose: A recent laboratory study in animals found that a single event during pregnancy caused both radial longitudinal deficiency (RLD) where part or all radius bone is missing and radial polydactyly where a child has extra thumbs. We want to see if this finding also occurs in children in the CoULD Registry. We believe there may be a group of patients with both RLD and radial polydactyly that share similar types and levels of severity.

Purpose: Our earlier research showed that existing classification systems for forearm involvement in multiple hereditary exostosis (MHE), a condition where multiple bony growths develop in the body, were not reliable. This study aims to create a new, improved classification system for MHE of the forearm using the Delphi method, which gathers anonymous expert opinions from the CoULD study group.

Purpose: This study purpose is to look at how Sprengel’s deformity, where one shoulder blade sits higher than the other, affects children. While most children have normal quality of life and little pain, some may have difficulty with physical activities. Researchers from the CoULD registry want to compare different surgical techniques to see which one offers better results for the patient.

Purpose: This study will explore how children with triphalangeal thumbs (thumbs with three bones instead of two) feel about their hand function, comfort, and relationships with friends. We expect to find that most children report good function and comfort, with those with more developed thumbs (type 3) showing higher function than those with less developed thumbs (type 1). We will also see if parents view their children’s hand function differently than what children report themselves.

Purpose: This study aimed to improve how synpolydactyly (a condition where a child has extra fingers that are joined together) is categorized by using X-rays and photographs. A better classification system can help hand surgeons communicate more easily and understand the condition better, which can improve patient care.

Findings: The updated classification system was able to categorize all 33 cases of synpolydactyly, while the original system could only categorize 25 out of 33 cases. This new system will help hand surgeons report cases more accurately and may improve how the condition is treated.

Purpose: This study looked into complications occurring after surgery for children enrolled in the CoULD registry.

Findings: Out of 2,430 surgeries on 1,930 children, about 5 out of 100 surgeries had problems. Most problems were minor. Fingers joined together (syndactyly), issues with thumbs (underdeveloped), and extra fingers (polydactyly) were common conditions where issues arose. The study found that even though there were some problems, they weren’t linked to specific health issues or conditions in the kids. The study helped doctors understand what might cause problems during surgery.

Purpose: Congenital radial head dislocation (CRHD) is a condition where the radius bone in the elbow is not in the correct position from birth. This can affect how well the elbow works. This study looked at how children with CRHD feel about how their arm works and how happy they are.

Findings: Children with CRHD said their arms don’t work as well as other kids’ arms, but they didn’t feel more pain or less happiness compared to their peers.

Purpose: Radioulnar synostosis is a congenital condition where the two bones in the forearm, the radius and ulna, are abnormally fused. This study looks at how the position of the forearm affects a child’s ability to use their arm and how it impacts their emotions and daily life.

Findings: Parents shared that children with this condition have more difficulty using their arms and participating in sports or physical activities compared to other kids. However, these children are just as happy as their peers. The biggest challenges were seen in children whose forearms are turned more than 45 to 60 degrees inward, which might help doctors decide on the best treatments.