Thank you for submitting a research request through the Williams Syndrome Registry. Start by providing the PRINCIPAL INVESTIGATOR information below.
Principal Investigator First Name
* must provide value
Principal Investigator Last Name
* must provide value
Principal Investigator Middle Initial
Principal Investigator Email Address
* must provide value
Please re-enter PI email address
* must provide value
Bachelor Level Degree
Masters Level Degree
PhD or other Doctoral Level Degree
MD
Degree Candidate
Principal Investigator Institution
Alabama Alaska Arizona Arkansas California Colorado Connecticut Delaware Florida Georgia Hawaii Idaho Illinois Indiana Iowa Kansas Kentucky Louisiana Maine Maryland Massachusetts Michigan Minnesota Mississippi Missouri Montana Nebraska Nevada New Hampshire New Jersey New Mexico New York North Carolina North Dakota Ohio Oklahoma Oregon Pennsylvania Rhode Island South Carolina South Dakota Tennessee Texas Utah Vermont Virginia Washington West Virginia Wisconsin Wyoming Non-US
Please provide contact information for primary study contact if different than principal investigator.
Please re-enter study contact email
Bachelor Level Degree
Masters Level Degree
PhD or other Doctoral Level Degree
MD
Degree Candidate
Study Contact Institution
Please indicate by re-entering the email (either that of the PI or study contact) you would like to be associated as contact for this specific request.
* must provide value
Please re-enter the email designated as request contact above.
* must provide value
Please select the type of request:
* must provide value
Make an Inquiry About Registry Data Announce My Study Access Medical Record Information Recruit at a WSA Convention
A central purpose of the Registry is to inform its membership about important and relevant research opportunities. To request that your study flyer be posted on the Registry website, submit a study proposal by providing the information requested below. For additional details, please see "Instructions for Researchers" on your Home page.
IRB-Approved Project Title (required):
* must provide value
Abstract (optional):Provide a brief, scientific description of your study for Registry Staff. It should not exceed 500 words.
Family Friendly Title (required):This may match the overall title or be a shorter, family-appropriate title.
* must provide value
Short Family Description (required):Provide a brief (i.e. few sentence) description of your study. Be sure to include your study criteria here. For details on how this will be used, see "Instructions for Researchers."
* must provide value
Upload Documents
IRB Approval Letter (required):
IRB Approved Study Flyer (required): See "Instructions for Researchers" for an example Note that in most cases, families will express interest in learning more about your study directly to the Registry. Contact information from interested families will be conveyed to you by the Registry.
Consent Document for the primary participant (required):
Study Questionnaire (Optional): If there are multiple questionnaires, upload as one document.
Other Supporting Documents (optional):
Prior to submitting this request, please review the document "Snapshots of Registry Data" (accessible in the introduction to this survey). Commonly requested items have already been aggregated in a de-identified manner and available for your review.
Share Your Criteria of Interest:
Optional Reason for Interest:Feel free to use this space to share your rationale for the this request if you feel it will enable the Registry to be more helpful in identifying your information of interest.
The Registry collects medical records on individuals with Williams syndrome. These medical records span all areas of care. The Registry is able to share information abstracted from these records as well as provide you de-identified electronic copies of medical records. Note, that any sharing of information/medical records will require IRB approval on your end and may also require a data use agreement to be signed. Registry staff will be in communication with you following submission. This is currently an individualized process due to IRB/HIPAA compliance and the presumably unique need of each researcher.
Requested Data/Records (required):Example 1: I would like to verify the genetic diagnosis of WS for individuals participating in my study. Example 2: I would like to review the echocardiogram and catheterization reports for any 10-20 year old with WS.
Optional Reason for Interest: Feel free to use this space to share your rationale for the this request if you feel it will enable the Registry to be more helpful in identifying your information of interest.
IRB-Approved Project Title (required):
IRB Approval Letter (required):
If you are interested in scheduling participants for a study you are running on-site at a WSA Family Convention, complete the form below to request the Registry post your study flyer. For additional details, please see Detailed Instructions for Researchers at the top of this survey.
IRB-Approved Project Title (required):
Abstract (required):Provide a brief, scientific description of your study for Registry Staff. It should not exceed 500 words.
Family Friend Title (required):This may match the overall title or be a shorter, family-appropriate title.
Short Family Description (required):Provide a brief (i.e. few sentence) description of your study. Be sure to include your study criteria here. For details on how this will be used, see "Instructions for Researchers."
Upload DocumentsPlease check your files carefully before uploading.
IRB Approval Letter (required):
IRB Approved Study Flyer (required):Note that in most cases, families will express interest in learning more about your study directly to the Registry. Contact information from interested families will be conveyed to you by the Registry.
Submit
Save & Return Later
