What is the Childhood Apraxia of Speech Research Registry?
The Registry is a list of as many individuals with Childhood Apraxia of Speech (CAS) as possible, containing information about each child’s health and developmental history. Once data is collected and enough children are registered, this list eventually will enable authorized researchers to find possible subjects for research projects and offer families an opportunity to participate in research, if they chose. Finally, the Registry will allow researchers to examine trends and data about groups of our children with apraxia over time.
Why Is the Registry Needed?
Knowledge about the main characteristics, prenatal, developmental and medical history is very much needed in order to make progress in diagnosis, treatment, and even prevention of childhood apraxia of speech. Advances in genetics and other areas appear to indicate that a portion of children with various conditions may also have apraxia of speech. Researchers may find it difficult to locate children for participation in studies associated with specific genetic or neurological differences, for example. To meet this need, CASANA has created the Childhood Apraxia of Speech Registry. The Registry will help centralize and collect information so we can track how children evolve over time and what happens to their speech and other areas of life functioning. Authorized researchers can then use the Registry as a data/information resource and for recruitment of participants for research studies. Making this connection between families and researchers is an important step in CAS research!
Who can Join?
Any parent or legal guardian of a child that has been diagnosed with apraxia of speech can join. The parent will provide all initial information as well as updates on behalf of the child. Also, adults with a history of CAS can join and provide their own information.
If I join, what does it mean?
Joining the registry will help us unite families with researchers. Joining the registry does not mean that your child has to participate in any specific research study. Rather, the registry provides you and your family an easy way to learn about studies for which your child may be qualified. Also, providing information on various aspects regarding your child, such as age of diagnosis, speech characteristics, and history, will enable us to learn more about what happens over time to children diagnosed with CAS. Private member forums will also enable those with similar children to connect and interact.
Your Privacy is Protected
None of your identifying information will be provided to third parties. Authorized researchers will only be able to view depersonalized data, group data, and ask CASANA to share information about research studies with specific members of the registry. Children or families who are eligible for a particular study can only be contacted through the appropriate CASANA staff. Your data will be stored in a secure database that is compliant with Health Information and Privacy Act rules and regulations. CASANA has partnered with RemedyMd in order to assure a system that is privacy compliant.
Getting Started with the Registry
The registration process will take 60 – 90 minutes to complete. Before you get started with entering your child’s or your own information, we suggest the following:
- Gather any reports that you have from your child’s speech & language pathologist, medical doctors, etc. You will be asked for specific information and having the reports available may help you complete the registration. You will also have the option to upload reports after registration is completed.
- Have a calculator handy. In several places, you may find that you need to do simple calculations or units of measure. For example, you may need to list your child’s age in month’s versus years.
- If you do not finish, you can return later and continue to add information. Save your progress by clicking the “Next” button at the bottom of each page.
- Once you finish the registration, you will be able to upload photos, audio files, video files and reports. Instructions about what photos may be most helpful as well as how to elicit an audio sample of your child’s speech that would be most helpful will be provided once you identify the type of file you wish to upload. These bits of additional information will certainly help researchers who are seeking participants with certain characteristics.
Primary and ongoing funding for this project is from the Walk for Children with Apraxia.
Additionally, the Silent Stars Foundation has provided funding for the registry.