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mseed1720 |
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| Hello everyone - I have changed email and am not frequently on this board as life has taken over (everything gets busier as kids get older!). I do hope, though, that you will read this request and respond accordingly. This is an exciting prospect and one I hope will be far reaching. Thank you for your time in reading and responding. As stated at the bottom, please don't hesitate to contact any of us personally if you have further questions. Julie At the most recent Early Onset Scoliosis meeting (an organization of the pediatric orthopedic surgeons in the USA and from around the world, focusing on scoliosis in young children), the process of creating a public registry specific to Early Onset Scoliosis, including all types of scoliosis effecting young children, was initiated. Dr. Kit Song is the lead investigator on the project. The goal of this registry is to help families identify accredited centers and surgeons and be able to learn more about treatment preferences, infection rates, outcomes, current research, etc. The hope is that, as a successful registry is built and used, it will lead to the establishment of a National Foundation for Early Onset Scoliosis. Development of the Foundation would serve to increase public knowledge as well as public support and provide a place where families can connect, share experiences and valuable information, as well as be a place to offer invaluable personal support. One of the anticipated challenges in establishing a public registry is ensuring that the best information is available to answer the most frequently asked questions, and the questions asked initially by parents and family members new to the diagnosis. Dr. Song has invited a small group of parents to help with the development of this registry and now we are coming to you for your insight and expertise. We are asking that you provide suggestions as to what questions you had initially, and/or what information would have been helpful to you as your family started this journey. Possible thoughts to get you started: "what was the hardest part for your family in choosing a treatment or in choosing a center to receive treatment?" and "what information were you missing when you learned of your child's diagnosis?". Please feel free to submit your thoughts on the site that you are receiving this request (VEPTR board, facebook, etc) or you are welcome to contact any of us individually using our email addresses listed below. We need your input no later than February 29th in order to compile the data and move forward through the process. We will gather the information and fine tune it, with further input from you, until it is specific enough, yet very informative, to be a good starting point for the public registry. Please know that regardless of the treatment options you chose or are considering, we still need your participation! The registry and foundation are being established to provide information and support for the broad spectrum of Early Onset Scoliosis, not any one treatment approach. Thanks for your help in furthering public awareness and working to provide transparency regarding a diagnosis that we all know is complicated and scary. Carmell Burns - [email protected] Colleen Diedrich - [email protected] Stephanie Fournier - [email protected] Julie Wilcox - [email protected]  | |||
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| mseed1720 |
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