Families & Researchers Working Together to Advance Understanding of Williams Syndrome
Frequently Asked Questions
- Why do I have to join the Registry?
- Do I have to pay to join the Registry or use Researcher Functionality?
- By using the Registry, am I agreeing to anything?
- How often do I have to join the Registry?
- Is the Registry the same as a listserve? Is it a database?
- What if I am a parent as well as a researcher?
- What type of data does the Registry collect?
- I am interested in recruiting subjects through the Registry. How do I do this?
- Can I work with the Registry to recruit for multiple studies at once?
- Why must I request permission to recruit through the Registry?
- Does the Registry process grant applications requesting money from the WSA?
1. Why do I have to join the Registry?
By creating an account, you will gain access to online Registry functionality. As part of the registration process, you will also be asked to provide a small amount of demographic information about the principal investigator. This information is collected solely to protect the privacy of families who are Registry members. You can provide additional details about your study team after account creation. [top]
2. Do I have to pay to join the Registry or use the Researcher Functionality?
No. Access to the Registry and use of its functionality are free to you, as costs are defrayed by the WSA. [top]
3. By using the Registry, am I agreeing to anything?
If your work utilizing the Registry resources is accepted for publication or presentation, the WSA asks that you provide a lay summary of your results to be shared with Registry members. The WSA also asks that you acknowledge the Registry as a source of study participants in the Methods section of your publication or presentation. Finally, the Registry requests annual enrollment numbers for any study that recruited or was run through the Registry, and that if you request access to large sets of medical records you may also be asked to provide your abstracted data back to the Registry. [top]
4. How often do I have to join the Registry?
You only have to create a researcher account once. After your account has been created you may take advantage of functionality available to you as often as you wish. [top]
5. Is the Registry the same as a listserve? Is it a database?
No. Although the Registry has features of both a listserve (i.e. the ability to quickly reach many people all at once) and a database (i.e. the collection of health and developmental information on persons with Williams syndrome), it is a more robust tool. The Registry is designed to offer a tailored approach to recruiting potential study participants and to running studies; it also collects natural history information online and in real-time. [top]
6. What if I am a parent as well as a researcher?
For now, please contact Registry Staff but you can certainly join as both! [top]
7. What type of data does the Registry collect?
Currently, the Registry collects and organizes parent/guardian responses to medical and developmental information about their family member with Williams syndrome. This information is updated on a yearly basis. The Registry also began collecting medical records in early 2016. It does not presently collect physician reported data or biologic specimens. [top]
8. I am interested in recruiting subjects through the Registry. How do I do this?
After you join the Registry and your account is activated, complete the “Announce My Study” form and provide some information about your study. You must log-in to access this and other forms related to Registry functionality. [top]
9. Can I work with the Registry to recruit for multiple studies at once?
Yes. You may submit as many requests to recruit from the Registry membership as you wish. [top]
10. Why must I request permission to recruit through the Registry?
A review process has been requested by the WSA for all studies recruiting through the Registry. This process, which provides another layer of protection for families, primarily assesses whether the study appropriately utilizes Registry resources and has been submitted in the requested format. The review should be brief and is not designed to replace your local IRB review nor be as detailed as a grant or manuscript review. The review will be done by Registry Staff, in consultation with the Professional Advisory Committee and experts in the field, as needed. [top]
11. Does the Registry process grant applications requesting money from the WSA?
No. At this time, the Registry is primarily a tool for encouraging and enabling clinical research. Please contact the WSA at email@example.com or 248-244-2229 for more information about their funding opportunities. [top]