Research

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Participation forms

Below are Adobe PDF files that can be downloaded by physicians and their associates and by patients participating in our research studies. There are 6 forms currently in use: the directions for study form and family information sheet are for information purposes only. The informed consent form must be completed by each study participant who chooses to enroll in our research study as a requirement of our Institutional Review Board. We would also like to obtain a completed participation data sheet and physician information sheet by each participant. If you are not able to get the physician information sheet completed at the time of enrolling in the genetic study then please complete the medical release form. This will enable us to obtain a copy of your/your patient's clinical records.

If you are unable to download this information please e-mail Caroline Andrews or call her on: 617-919-2168 and she will provide the forms to you via fax or mail.

Study Directions
This form contains tick boxes detailing what is provided in your participation package and describing what needs to be undertaken before the salivary specimens or blood tubes and forms should be sent to our lab.

The Informed Consent Form is approved by our Institutional Review Board and must be read and signed before we can undertake testing on your samples.

Primary consent form
Below is a brochure to provide further information on research participation for patients seen at Boston Children's Hospital. Also there is a consent form to be completed and signed by each research subject prior to commencement of the research study.

Participation Data Sheet
This form is for completion by each study participant and will provide us with general information pertaining to your contact details and description of your family tree.

Physician Information Sheet
This form is to be taken to your ophthalmologist for completion when you have your next appointment.

Medical Release Form
Please complete this form to enable our obtaining detailed clinical information from your ophthalmologist and/or other medical records.

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