Emily's Entourage Patient Registry
A patient registry for individuals with nonsense mutations of Cystic Fibrosis maintained by Emily's Entourage.
First Name *
Your answer
Last Name *
Your answer
Email *
Your answer
Date of Birth of the Individual with CF *
Phone Number
Your answer
Your answer
Your answer
Connection to Cystic Fibrosis *
Are you legally authorized to submit information about yourself or on behalf of another individual? *
Mutation 1 (i.e. W1282X) *
Your answer
Mutation 2 (i.e. G542X) *
Your answer
Please indicate with which bacteria you or your loved one is chronically colonized (select all that apply)
How far would you be willing to travel for a clinical trial? *
Additional Comments
Your answer
Please read the following terms of participation in the Emily's Entourage Patient Registry
Emily's Entourage maintains a voluntary registry of individuals with nonsense mutations of Cystic Fibrosis. The purpose of the registry is to collect limited information about individuals with nonsense mutations so that Emily’s Entourage may inform them about relevant research, clinical advances and drug trials.

Participation in the registry is voluntary and is not related to any medical care, treatment, research or insurance. There is no cost to be included in the registry and you will not receive any payment for being included. The primary benefit of enrolling in the registry is the opportunity to be informed of relevant clinical advances and drug trials. Any questions regarding the patient registry should be directed to: admin@emilysentourage.org.

By submitting this form, you authorize Emily’s Entourage to contact you regarding relevant clinical advances in Cystic Fibrosis, which may include, but is not limited to, identifying opportunities to participate in research studies and drug trials, and new advances in treatment, and to contact you regarding the foundation's updates and news, including fundraising opportunities. While Emily’s Entourage strives to provide helpful and accurate information, Emily’s Entourage makes no representations as to the accuracy of the information provided, that the treatment is effective or that the information is complete or exhaustive. The choice to participate in any research study or drug trial is totally up to you, and you agree that Emily’s Entourage incurs no liability for your choice to participate or not participate.

Unless you give your permission for others to contact you, you will only be contacted by Emily’s Entourage. You authorize and consent for us to include the information provided to Emily’s Entourage in a database with other individuals. You consent to the disclosure of the information provided in this form in the event that such disclosure is reasonably necessary for the operations of Emily’s Entourage, as specified herein and as permitted, or required by federal or state law.

Emily’s Entourage strives to protect your information, including restricting access to the database to representatives of Emily’s Entourage. Even so, there is always a risk that unauthorized users could gain access to the registry. By providing Emily’s Entourage with this information, you agree to accept the risk that unauthorized users may have access to your information and you agree to waive any and all claims against Emily’s Entourage related to the unauthorized access to or use of your personal information in the patient registry. Should any foregoing term, condition, clause, sentence or paragraph be finally adjudged by any court or arbitrator of competent jurisdiction to be unconstitutional, invalid, or in any way unenforceable, such adjudication shall affect only the clause, sentence, paragraph, or other parts so adjudged. In the event that the waiver is severed, the parties agree that any dispute arising out of the registry shall be submitted to final and binding arbitration to the American Arbitration Association, including disputes concerning the scope, validity or applicability of this agreement to arbitrate, with venue being located in Philadelphia, Pennsylvania.

Do you agree to the terms of participation in the Emily's Entourage patient registry? *
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