Customer Satisfaction Survey of the
Genetic and Rare Diseases Information Center
National Center for Advancing Translational Sciences
October 2014
Report of Survey Data
Background
The Genetic and Rare Diseases Information Center (hereinafter referred to as GARD) has been in operation for
approximately 12 years. It was created by two agencies of the National Institutes of Health (NIH), the
NCATS/Office of Rare Diseases Research (ORDR) and the National Human Genome Research Institute
(NHGRI). GARD provides patients, family members or friends of patients, health care providers, researchers,
advocacy groups, the general public and other audiences with information in English and Spanish about genetic
and/or rare diseases.
Since its inception, GARD has made changes in how it delivers information. In 2008, GARD expanded its
service by creating a web presence (i.e., web pages located on the NCATS/ORDR website) that enables visitors
to conduct their own searches for information about genetic and/or rare diseases. Since 2008 changes have been
made to the web pages based on usability testing and other feedback provided by visitors to the site.
There are currently three ways that a person can conduct a search for information about a particular genetic
and/or rare disease. He can enter the name of the disease/condition in a search box, browse diseases by first
letter or number, or find diseases by category, e.g., eye diseases, skin disorders, etc.
In addition to the search function, the GARD web pages consist of other helpful information such as how to find
a disease specialist, tips for the undiagnosed, and financial aid resources. There is an About GARD web page
that provides information about who GARD can help, where to start searching for information, where GARD
gets its information, how to get more information, and how to contact GARD staff. The About GARD web page
also has links to materials on broader topics of interest such as an article for health-care professionals’
newsletters, a video for researchers, a GARD brochure and flyer, and information on how to find a specialist,
financial assistance, etc.
If a visitor is unable to find the name of his condition using the search function or needs additional information,
he can contact an information specialist at GARD. To contact an information specialist, the visitor can complete
and submit an online contact form, send an email, send a letter by U.S. mail (Genetic and Rare Diseases
Information Center, P.O. Box 8126, Gaithersburg, MD 20898-8126) or fax (301-251-4911), or call by dialing a
toll-free national (888-205-2311), TTY (888-205-3223) or international (301-251-4925) phone number between
12:00 noon and 6:00 p.m. Eastern Time. Requests for information submitted using the online contact form, U.S.
mail or fax are answered within 20-30 business days.
GARD tracks its inquiries and passively collects some data (e.g., role such as patient, family member or
physician, frequency of use of GARD, referral, country of origin and U.S. state) from individuals who seek
information from GARD. The information that is collected helps provide a better understanding of the
demographics of GARD customers. Some of the data currently collected by GARD is identified in this report
for comparative purposes to the survey data.
In 2006, a customer satisfaction survey of GARD was conducted. Although the survey methodology and
questions were reflective of how GARD provided its services at that time, some questions, in particular the
demographic questions, were asked in the 2014 customer satisfaction survey. This report includes a section that
compares the results of the 2006 survey to the results of the 2014 survey, as applicable.
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