“We need a place to gather data about hundreds of adults with arthrogryposis (AMC) in order to focus in on where research really needs to be geared. We need a place where practitioners can learn from a multitude of adults with AMC in order to provide higher quality health care. When I get the privilege to snuggle close a baby with AMC and I look into their sweet little eyes and hold their tiny bent hands, I realize that they will grow up and become an adult. That realization motivates me to work on this adult registry project because she deserves better then what I currently have. She is worth the effort.”
– Tracey Schalk, AMC Registry committee member (pictured with baby)
Two years ago Dr. Bonnie Sawatzky, Associate Professor in the Department of Orthopaedics at UBC, obtained a small grant from the National Rare Diseases organization in order to gather data on an understudied population within the AMC community: adults living with arthrogryposis. Dr. Sawatzky, who also has all-extremity arthrogryposis, created a survey about mobility and functional outcomes. 177 adults with AMC from across the world completed the survey, and the data collected resulted in a paper accepted for publication into the American Journal of Medical Genetics. A secondary survey specifically on pain in adults with arthrogryposis was conducted a year after the initial survey began.
The results of the initial survey have been interesting. For example, despite their significant physical challenges, the rate at which people with AMC obtain degrees is higher when compared to the general population. What else could be learned from gathering even more data, especially over time? Dr. Sawatzky held focus groups at the 2016 AMC Conference and proposed creating a registry to continue gathering data, which was met positively by all involved. You can support the creation of the registry with a donation today.
A registry would be a place for participants to enter data every year about their lives and update information as needed. Dr. Sawatzky discussed with participants what kinds of information should be collected in this registry, and formed a committee of adults with AMC to help inform her work. The participants suggested collecting data about all aspects of life from employment, relationships and leisure, to pain, secondary diagnoses, mobility levels and the kind of adaptive equipment used.
Once established the AMC registry will be invaluable in informing future research, ultimately helping to improve the lives of adults and children alike. We need your support in order to move forward with this critical initiative, so please make a donation to support the creation of the AMC registry.
“Bonnie’s research will help us know more about long-term outcomes for those aging with AMC, as well as help us manage pain and maintain a good quality of life for as long as possible. Furthering this research will enable us to take better care of ourselves as we age, educate the medical community about treatments for adults with AMC, and will be an invaluable resource to families as they navigate the many uncertainties of caring for a child with AMC. We all benefit from this research; we owe it to this incredible family we find ourselves in.”
– Nicole Sidebottom, AMC Registry committee member