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The Registry - Functionality

Families & Researchers Working Together to Advance Understanding of Williams Syndrome

Researcher Functionality

After joining the Registry, you will be able to take advantage of Researcher functionality to assist your research.  If there are additional tools that could help your research, but do not yet exist, let us know.

 

Review Information provided by families: Explore data collected by the Registry

Both medical and developmental information is collected annually from the parents/guardians of individuals with Williams syndrome belonging to the Registry. Once logged on you can:

  • View the questions answered annually by families
  • Review regularly updated statistics on common data elements
  • Ask for a detailed Registry search.  This allows you to request specific data related to your features of interest.

The Registry hopes that by exploring data collected by the Registry, you will be able to:

  • Determine if there are enough potential participants for your study.
  • Determine the demographics of potential participants (such as geographic region, age, gender, etc).
  • Explore the frequency of common problems in Williams syndrome.

Submit a Request to Recruit Registry Members: Ask the Registry to recruit individuals with Williams syndrome on your behalf

  • Submit details about your study. After a brief review process, the Registry will rapidly distribute your study announcement to all Registry members or to the subset who meet the eligibility criteria you specify.
  • The Registry will contact families about your study. 
  • Depending on your preference, you will be given contact information for every family who expresses interest in your study or your survey will be distributed anonymously.

Request Medical Records:  Review de-identified information abstracted from medical records or even actual medical records

  • Tell the Registry what records or information you are looking for
  • Registry Staff will work with you to provide (when available) redacted data or medical record sets you request.

Develop Surveys for Registry Members: Run your study through the Registry

Researcher functionality also includes the ability to build and deliver questionnaires online to the Registry membership. This functionality is presently available by working with the Registry Staff but the ability to enable independent utilization by researchers is under construction.  

If you think you are interested in joining, get started here!

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