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 young adult 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
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
mhd2002@nyu.edu
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 by the 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 over the
phone.  I will need to talk to the 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 interested in participating in this short, less than 10 minute survey, please
call my office at 832-824-3800 or just send an e-mail to  Elenberg@bcm.edu, including
the:

 
    • 1. Age of your child with Cystinosis
    • 2. If the child is on dialysis or has been transplanted
    • 3. Your telephone number
    • 4. Best time to call you
If you live outside of the USA and are interested in 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
     
June 2009  

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

 

 



CRN 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.

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.


Patient’s Name*
Date of Birth*
Parents’ Names*
Address Line 1*
Address Line 2
Phone
Email*


Visual Captcha



Please confirm letters above

 

This information can be mailed or emailed to:

Elva Smith
Vice President, Research
417 Clairemont Avenue, Unit 209+
Decatur, GA 30030
esmith@cystinosis.org

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 above address.

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