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dAoTHgQtPjES2cVVggcApypmeiHMBqMeDH8YmXrheGLEA5u3U4S6dVVd9P5syL46uWVM33r27IFEhB5ikwc6yXCjk9rLB

Pre-consent screening page for CReWS Consent.v2

Returning?

A A A

Welcome to the screening page of the Collaborative Registry for Williams Syndrome!

Below are some questions to get us started. Once you have submitted this form, you will receive a link to the consent form and some basic questions about the person with Williams syndrome.

This screening form, consent, and registration are estimated to take 20 minutes to finish.

Thank you!

The primary purpose of the Collaborative Registry for Williams Syndrome (CReWS) research is to collect data about the lives of people diagnosed with Williams syndrome, to advance understanding of the condition. After registration, all participants will be invited periodically to answer surveys on medical, developmental and social concerns for those with Williams syndrome. If you attend Williams Syndrome Clinical Consortium sites*, your medical providers will add data from your medical visits to your research record. If you previously sent information to the Registry at Massachusetts General Hospital, that information will be transferred to CReWS.

*Williams Syndrome Clinical Consortium sites

• Williams Syndrome Specialty Clinic, Lucile Packard Children's Hospital/Stanford University
• Nemours Children's Health System Cardiac Center Williams Syndrome Program
• Boston Children's Hospital
• Massachusetts General Hospital
• St. Louis Children's Hospital Williams Syndrome Center
• Children's Hospital at Montefiore Williams Syndrome Clinic
• Nationwide Children's Hospital
• Children's Hospital of Philadelphia Williams Syndrome Clinic

Please press submit to proceed to study registration.

1. The people enrolled in this study identify with a diagnosis of Williams syndrome. Once you have consented, you will be asked to send or upload a copy of laboratory results or a doctor's note confirming a diagnosis. How was the participant diagnosed with Williams syndrome? (Check all that apply)

* must provide value

A diagnosis made by a doctor, without genetic testing

FISH testing positive for deletion of ELN gene

Array CGH, MLPA, or SNP microarray showing deletion on chromosome 7q11

Whole genome sequencing showing deletion on chromosome 7q11

Other genetic testing

I don't remember/I don't know

2. At the end of the consent form, an authorized person will be asked to sign permission to participate in the registry. Please check the option that applies to you:

2a. Select one:

* must provide value

The person with Williams syndrome is under age 18

The person with Williams syndrome is 18 years or older

reset

2b. A legally authorized representative (LAR) is a person who is allowed under the law to consent on behalf of an adult with cognitive impairment to allow them to take part in research. Some examples are listed below, in order of priority. Please choose the option highest on the list that applies to you.

I have Williams syndrome and I am able to consent for myself.

I am a court-appointed guardian for the potential participant.

I have durable power of attorney for health care for the potential participant.

I am the parent of the potential participant.

I am the adult sibling (brother or sister) of the potential participant.

I am another close relative of the potential participant.

3. If the participant with Williams syndrome is over age 18, are you aware of anyone with higher priority than you, (listed above you) who is involved in the care of the individual with Williams syndrome? For example, if you are the adult sibling of a potential participant, someone with durable power of attorney for healthcare is higher on the list than you are.

Yes

Unsure - Please contact Michele Disco, project coordinator, at (212) 305-1573 or crews@cumc.columbia.edu

reset

We are sorry, but the individual higher on the list will need to review and sign the consent forms. Please invite that person to review and sign the consent.

Please tell us the email address of the person who will be signing the consent.

A personalized link to the consent and registration form will be sent to this address.

* must provide value

Click SUBMIT.

Thank you for taking the survey.

Look for a personalized link to the consent and registration forms in your inbox.

Have a nice day!

You have selected an option that triggers this survey to end right now.

To save your responses and end the survey, click the 'End Survey' button below. If you have selected the wrong option by accident and/or wish to return to the survey, click the 'Return and Edit Response' button.