The ASSH Annual Meeting was in Toronto this year. As usual, it was a fabulous meeting and its always great to connect with friends from across North America and the world. There were very good pediatric sessions throughout the week!
We had a fantastic Pediatric Hand Study Group (PHSG) meeting. The group continues to grow with a goal of discussing ways to improve the outcomes of children with birth differences of upper extremity. The group was started in 1998 and stewarded by Ann Van Heest and Michelle James until this year when leadership was transitioned to an outstanding trio: Lindley Wall (Washington University), Andrea Bauer (Boston Childrens) and Apurva Shah (Childrens Hospital of Philadelphia). They are hard at work planning the future of the group and our spring 2024 meeting planning is under way.
I also spent some time with our CoULD Study Group which is based on the COULD Registry. This group was founded in 2014 and continues to enroll patients- we are now ~5000 patients enrolled at 14 hospitals. We have 19 hospitals interested in joining and try to proceed slowly and carefully to assure proper onboarding and the best possible set up for success. We are communicating more with the public via website and Facebook.
The goal of the group is to help progress in research and we are proud of our accomplishments with over 20 published scientific manuscripts and another 15+ in progress.
Finally, the CoULD team engages internationally with other registries as collaboration is clearly the future. So much progress in multiple registries across the globe including CULA North, the Australian Limb Differences Registry, a new, in progress, registry in Southeast Asia, and others! Very exciting.
I would like to know if there is a family support group for children who were born with cleft hands. I would like to know the experience of other families in the evolution and adaptation of children with this condition as they grow up.
Hello and thank you for writing. I do not know of a support group for kids/ families with cleft hand. Facebook has been a good resource for many. Hopefully, someone reading this post may provide a connection. Good luck.