1. Study Description

Research Study Participants Needed

For Interviews with

Adults (18+) with cystinosis*
Fathers and mothers of adults with cystinosis*

The purpose of this research is to understand the experience of growing up with and living with cystinosis
as an adult and young adult.

Interviews are being planned for June 2012 in the UK. Dates will be finalized based on number of registrations and where interested participants live.

Interviews will last 60-90 minutes. Individual interviews conducted by researcher will take place in participant’s home or a location convenient to your home.

Parents may participate in individual interviews only if their young adult child does too. Young adults must consent to their parent(s) being interviewed

You may contact researcher by email to ask questions about this study.
Researcher will contact you by email or phone to discuss your eligibility for the study and answer any questions.

If you have previously registered to participate through the US site, please register here to assist with planning.

Researcher contact information:
Maya Doyle, LCSW, ABD
Silver School of Social Work
New York University
1 Washington Square North
New York, NY 10003

This study has received IRB approval from New York University's University Committee on Activities Involving Human Subjects, HS# 11-8415, as of June 17, 2011. This study has received grant funding from the Cystinosis Research Network.