Current Research

Current Research

(For Families)

We have made a lot of progress using information families like yours helped to collect for the CoULD registry. Here you will find summary information about our ongoing studies.

The Effect of Adoption Status (on PODCI scores) of Children with Congenital Upper Limb Anomalies by Lindley Wall MD MSc. This study compares how adopted children compare with children born into their families function and feel about their congenital arm differences.
Association of Radial Longitudinal Deficiency and Thumb Hypoplasia: An Update Using the CoULD Registry by Andrea Bauer MDOften children born with a short or absent radius bone (radial deficiency) have underdeveloped thumbs.  In this study, we found that children with radial deficiency associated with syndromes like Holt-Oram and Fanconi anemia are 2.5 times more likely to have underdeveloped thumbs.
Characteristics of Severe Hand Anomalies in Patients with RLD by Lindley Wall MD, MSc. By looking at the children in COULD who were born with no thumb, we identified a group of children who were even more affected and were born with no thumb or index finger. We found a pattern of involvement and developed a modified classification system to improve communication about these differences. 
Type 3A vs 3B hypoplastic thumb- radiographic characteristics by Deborah Bohn MDChildren with an underdeveloped thumb have a distinct shape in their hand bones,  therefore by looking at radiographs of their thumbs, hand surgeons want to find patterns that will predict what will be the best surgical treatment they could receive. 
Patient and Parent Reported Outcomes (PRO) for Children with Hereditary Multiple Osteochondromas (HMO) by Michelle James MDThis study looks to see how physical function, social relationships, and emotional health of children with multiple hereditary osteochondromas (HMO) compare to children in the general population.
Reliability of the Masada classification/radiographic assessment of forearm osteochondromas by Carley Vuillermin MD, MPH.This study seeks to determine what is the most reliable classification system to describe forearms in patients  with multiple hereditary osteochondromas (HMO). 
Symbrachydactyly vs transverse deficiency: Do Nails and Nubbins Matter? A comparison… by Ann Van Heest MD.Our research team is comparing the clinical characteristics of children with transverse deficiency, symbrachydactyly and cleft hand to determine if there are any differences among children with or without short fingers and/or fingernails. 
How risky are risk factors? An analysis of perinatal risk factors in patients participating in the CoULD registry by Andrea Bauer MD.Using the CoULD registry, our researchers are trying to determine what pregnancy factors (for example, high blood pressure or diabetes) are associated with congenital arm differences. 
Physical activity and Sports Participation of patients with congenital upper limb differences by Donald Bae MDThis 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. 
PROMIS and geographic variation by Suzanne Steinman MD. Does where you live matter?  In this study, COULD researchers are trying to determine if children with congenital arm differences have different perceptions of their function depending upon which part of the country they live.