Research Guide for Families
Finding information about research related to
disability is not always straightforward. We have pulled together some
resources to help the process. Remember, if you are looking for
disability-specific information, start in the Family Village Library.
What type of research are you looking for?
Medical and biomedical research citations and abstracts can be found in
PubMed. This is the National Library of Medicine's database of more than
13 million bibliographic citations and abstracts in the fields of
medicine, nursing, dentistry, veterinary medicine, health care systems,
and preclinical sciences. PubMed can help you learn about the latest
research related to your child's diagnosis, and help you identify who is
doing research in a particular area.
- National Institutes of Health
- On-Line Research Articles - Other
sources of research articles.
- Medical Reference - Useful for
looking up unknown terms.
- Pharmacology Data Bases - provides
in-depth information on prescription and OTC drugs.
- Latest Science & Medical News
Plus News - past 30 days of news from the New York Times Syndicate,
Reuters Health Information and others.
Google Health News
- Collection of stories from variety of news outlets.
- Intellectual and Developmental Disabilities Research Centers (IDDRCs)
There are 14 of
these federally funded centers around the country with a mission to
advance diagnosis, prevention, treatment, and amelioration of
University Centers for Excellence in Developmental Disabilities (UCEDD)
don't perform medical research. However, many develop model programs
and publish resources of interest to individuals with disabilities and
- Waisman Center - The Waisman
Center houses an IDDRC and a UCEDD along with sponsoring the Family
Village and other programs.
Support groups & information networks often
provide information about the specific diagnosis they respresent
- NIDRR - National Institute on
Disability and Rehabilitation Research
- browse funded research on a variety of disability-related topics
- NARIC - National Rehabilitation
- NARIC Knowledgebase -
resources focusing on disability and rehabilitation
- Consumer/Public Search -
Access resources for employment, advocacy, benefits and financial
assistance, education, technology, and more.
- RehabWire -
Regular publication that highlights disability and rehabilitation research
Community programs and services vary greatly, not only at the state level,
but the county and community level as well. The best way to find out about
resources in your community is to find an information and referral provider
- Waisman Resource Center - If you live in Wisconsin, you can find
out about Wisconsin resources and programs by calling the Waisman Resource
Center at 1-800-532-3321.
- For visitors outside of Wisconsin - Ideas for finding personal help
in your state.
Not all states will have all the resources listed below. But they should
be able to help you track down at least one disability-related information and
referral service in your locale.
Children's Hospitals - Often have parent resource rooms. Click on
the link, scroll down to "Community Outreach Programs" then choose "Family
Resource Center" and click "Search" to get a listing of Children's Hospitals
that maintain resource rooms.
- 2-1-1 2-1-1 is an easy to
remember telephone number that, where available, connects people with
important community services and volunteer opportunities. Check the
service map on the 2-1-1
website to find out if it is available in your local area.
- AIRS - Alliance of Information and
Referral Systems - National organization of local, regional, and state
Information and Service providers. AIRS does not list members on their
web site, but does like to state AIRS Organization, which in turn can help
you find local organizations.
to view state AIRS affiliates.
Centers for independent living (CILs) are private, nonprofit
corporations that provide services to maximize the independence of
individuals with disabilities and the accessibility of the communities they
live in. One of their core services is Information & Referral.
- Family Voices is a national,
grassroots clearinghouse for information and education concerning the health
care of children with special health needs. There is a volunteer
coordinator in almost every state. To view a list of these
coordinators, click here.
- State Resources
- NICHCY -
Learn about resources and service providers in your state through NICHCY -
the National Dissemination Center for Children with Disabilities
LD OnLine - Click on your state's name to find the local chapters of
helpful organizations and other available resources for learning
Village State Resources - Web sites that are disability-related and
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July 24, 2012
Document Source: http://www.familyvillage.wisc.edu/university/