World Wide Resources Main Categories

World Wide Web Sites

Disclaimer: The following links are provided as a service to our users. This link does not imply endorsement or support of any programs or organizations. The Sickle Cell Information Center sponsors are not responsible for the content of the individual organization home pages. 

Click on a category below :

Health Care Providers, Sites for physicians, PA's NP's, RN's Social workers, Psychologists and all others giving care to sickle cell patients

 Patients and Families, Sites that are for lay audiences

 Kid Friendly, Sites with materials for children

 Organizations, Sickle Cell organizations, clinics, foundations, researchers

 New Born Screening - Genetics Materials for hemoglobin counseling and interpretation of new born screening tests

 Teachers and Students, Sites with educational materials needed for teaching or reports about sickle cell disease

 Scholarship resource page    See a list of scholarship web links for sickle cell patients

 Bone Marrow Transplant Sites specific to bone marrow transplant

 Cord Blood - Stem Cell, Sites specific to cord blood banking and stem cell transplants

 Incidence and distribution, Sites with details about the incidence, distribution and statistics about sickle cell disease

 Pain Management, Sites with pain management and pain assessment resources

Stroke prevention - Transfusion, Sites with resources about TCD, Stroke prevention and rehabilitation, transfusions and iron overload

Pharmaceutical web sites - Companies with products that benefit sickle cell patients

Other medical sites A list of major medical sites and resources

Other Languages - Sickle cell resources in Spanish, French and Portuguese

10 Things To Know About Evaluating Medical Resources on the Web  provided by the National Institutes of Health Web site.

The number of Web sites offering health-related resources
grows every day. Many sites provide valuable information,
while others may have information that is unreliable or
misleading. This short guide contains important questions you
should consider as you look for health information online.
Answering these questions when you visit a new site will help
you evaluate the information you find. 

1. Who runs this site?

Any good health-related Web site should make it easy for you
to learn who is responsible for the site and its information. On
this site, for example, the National Center for Complementary
and Alternative Medicine (NCCAM) is clearly marked on every
major page of the site, along with a link to the NCCAM
homepage.

2. Who pays for the site?

It costs money to run a Web site. The source of a Web site's
funding should be clearly stated or readily apparent. For
example, Web addresses ending in ".gov" denote a Federal
Government-sponsored site. You should know how the site
pays for its existence. Does it sell advertising? Is it sponsored
by a drug company? The source of funding can affect what
content is presented, how the content is presented, and what
the site owners want to accomplish on the site.

3. What is the purpose of the site? 

This question is related to who runs and pays for the site. An
"About This Site" link appears on many sites; if it's there, use
it. The purpose of the site should be clearly stated and should
help you evaluate the trustworthiness of the information.

4. Where does the information come from?

Many health/medical sites post information collected from
other Web sites or sources. If the person or organization in
charge of the site did not create the information, the original
source should be clearly labeled.

5. What is the basis of the information?

In addition to identifying who wrote the material you are
reading, the site should describe the evidence that the
material is based on. Medical facts and figures should have
references (such as to articles in medical journals). Also,
opinions or advice should be clearly set apart from
information that is "evidence-based" (that is, based on
research results).

6. How is the information selected? 

Is there an editorial board? Do people with excellent
professional and scientific qualifications review the material
before it is posted?

7. How current is the information? 

Web sites should be reviewed and updated on a regular basis.
It is particularly important that medical information be
current. The most recent update or review date should be
clearly posted. Even if the information has not changed, you
want to know whether the site owners have reviewed it
recently to ensure that it is still valid.

8. How does the site choose links to other sites?

Web sites usually have a policy about how they establish links
to other sites. Some medical sites take a conservative
approach and don't link to any other sites. Some link to any
site that asks, or pays, for a link. Others only link to sites that
have met certain criteria.

9. What information about you does the site collect,
and why?

Web sites routinely track the paths visitors take through their
sites to determine what pages are being used. However,
many health Web sites ask for you to "subscribe" or "become
a member." In some cases, this may be so that they can
collect a user fee or select information for you that are
relevant to your concerns. In all cases, this will give the site
personal information about you.

Any credible health site asking for this kind of information
should tell you exactly what they will and will not do with it.
Many commercial sites sell "aggregate" (collected) data about
their users to other companies--information such as what
percentage of their users are women with breast cancer, for
example. In some cases they may collect and reuse
information that is "personally identifiable," such as your ZIP
code, gender, and birth date. Be certain that you read and
understand any privacy policy or similar language on the site,
and don't sign up for anything that you are not sure you fully
understand.

10. How does the site manage interactions with
visitors?

There should always be a way for you to contact the site
owner if you run across problems or have questions or
feedback. If the site hosts chat rooms or other online
discussion areas, it should tell visitors what the terms of using
this service are. Is it moderated? If so, by whom, and why? It
is always a good idea to spend time reading the discussion
without joining in, so that you feel comfortable with the
environment before becoming a participant.

Send mail to aplatt@emory.edu with questions or comments about this web site.
Copyright © 1997 Sickle Cell Information Center
Last modified: March 10, 2005