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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: 617-355-7311 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.

Family Information Sheet

This form describes the eye disorders studied and techniques used.

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 Children's Hospital Boston. Also there is a consent form to be completed and signed by each research subject prior to commencement of the research study.

Brochure for Children's Hospital Boston participants

Consent form for enrollment at Children's Hospital Boston

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.

The forms below are the same forms as above but translated into Spanish.

Spanish version of Family Information Sheet
Spanish version of Participation Data Sheet
Spanish version of Physician Information Sheet


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