Participate

Patient Volunteer Listing

The Cystinosis Research Network is compiling a listing of individuals who are interested in participating in cystinosis research studies. If you are interested in having your name added to this list, you will be asked for some basic contact information and you will give CRN permission to release this information directly to researchers who are looking for individuals with cystinosis and/or their family members to participate in research studies. The researchers may then contact you directly in the future with various research opportunities.

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Submitting this information in no way indicates your commitment to participate in any clinical trial. Rather, it simply gives your permission for researchers to contact you directly. By forwarding this information, you give CRN permission to release it to researchers and their staff. You may have your name removed from this list at any time by contacting Elva Smith at the address below.

  1. Patient's Name*
    Please provide your first name
  2. Date of Birth
    Invalid Input
  3. Parent's Name*
    Please provide your last name
  4. Address #1
    Invalid Input
  5. Address #2
    Invalid Input
  6. Phone
    Invalid Input
  7. Email*
    Please provide your email

This information can be mailed or emailed to:

Christy Greeley
Vice President, Research
302 Whytegate Court
Lake Forest, IL 60045 USA
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Dec 2013

Subjects needed for Outcome and Quality of Life in Adults Study

About the Study:  Angela Ballantyne, Ph.D. and Doris Trauner, M.D., of the UCSD School of Medicine, are conducting a questionnaire-based research study to learn more about outcome and health-related quality of life in adults with the genetic-metabolic disorder, cystinosis.  This study is funded by the Cystinosis Research Foundation (CRF).  The purpose of this study is to gather vital information on outcome and quality of life in the ever-expanding population of adults living with cystinosis.  The information obtained from this study can also be used to weigh the risks versus benefits of new therapies or treatments for cystinosis.

What the Study Involves:  This is an online, questionnaire-based study that examines quality of life and outcome in adults with cystinosis.  Participants will be asked to log in to a secure, online assessment center and complete a series of questionnaires that will take approximately 1 to 2 ½ hours.  Questions will be asked regarding demographic background, health, medical issues, quality of life, and outcome in cystinosis.  Participation in the study is strictly confidential.  Data from all participants will be combined, and you will not be identified by name in any publication or teaching activities.

Who may participate?  Two groups of participants are being recruited to take part in this online study.  You are eligible to participate if:
(a) you are an adult over 18 years of age living with cystinosis
     OR
(b) you are a parent or nearest living relative of an adult who had cystinosis and passed away within the past 10 years.

Participation in this research study is completely voluntary.  If you would like to participate in the Cystinosis Adult Outcome study or if you would like more information, please contact 858-822-6800, or email Angela Ballantyne at This email address is being protected from spambots. You need JavaScript enabled to view it.

Click to download this pdf, Outcome and Quality of Life in Adults with Cystinosis

Nov 2012

The Pediatric Neurology Research Group at UCSD is conducting a research study about Outcome and Quality of Life in Adults with Cystinosis. For more information and to participate, please see the flyer

Jan 2012

Cystinosis in Emerging Adulthood Study
Research Study Participants Needed Individual interviews with Young adults (18-30) with cystinosis* AND Mothers and Fathers of young adults (18-30) with cystinosis*

The purpose of this research is to understand the experience of growing up with and living with cystinosis as a young adult. While a round of focus groups has already taken place with young adults and parents, you can still register to participate in individual interviews this Winter and Spring. Individual interviews conducted by researcher will take place in participant’s home or a location convenient to your home. Interviews will last 60-90 minutes. Parents may participate in individual interviews only if their youngadult child does too.

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.

Please visit https://www.surveymonkey.com/s/yacys for more information and to register or to participate.You may also contact researcher by phone or email to discuss this study.Researcher will contact you by phone to discuss your eligibility for the study.

Researcher contact information: Maya Doyle, LCSW, ABD Silver School of Social Work
New York University
1 Washington Square North
NewYork, NY 10003
212-957-3747
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Nov 2010

Research Participants Needed - Parent and Adult Focus Groups

Sept 2010

Cystinosis Research Opportunities at ClinicalTrials.gov

Aug 2010

Dr. Elenberg Quality of Life Study Needs Particpants
I am conducting a Quality of Life study, funded bythe Cystinosis Research Network and I would like to encourage you to participate. The study involves less then 10 minutes of your time and can be conducted overthe phone. I will need to talk tothe patient and one of his/her parents (if child is less than 18 years old).

In order to respect your private time, I would prefer if you let me know when it is the most optimal time for me to call you. I also need to know in advance the age of your child (can be adults with Cystinosis as well) and if she/he is on dialysis or has been transplanted (there are different surveys for each).

If you are interestedin participating in this short, less than 10 minute survey, please call my office at 832-824-3800 or just send an e-mail to This email address is being protected from spambots. You need JavaScript enabled to view it. , including the:

  • Age of your child with Cystinosis
  • If the child is on dialysis or has been transplanted
  • Your telephone number
  • Best time to call you

If you live outside of the USA and are interestedin participating, please send me an e-mail and I will send you the survey via mail.

Nov 2009

Participate in a Survey on Swine Flu and Cystinosis

H1N1 and Flu vaccinations in the Cystinosis community

UCSD Project in Cognitive and Neural Development

Study on Stress and Coping in Cystinosis

Jan 2008

Dr. Schneider and Fidler Seeking Volunteers

Study to learn more about how to prepare blood samples for Cystine Levels

Mar 2007

Dr. Thoene seeking Participants

Cystinosis Tissue Registry

Oct 2006

Dr Trauner seeking Participants

Cognitive Research Studies