Doing Your Own Research
- Learning how to do internet research
- Dwarfism Support Groups: Dwarfism, Genetics, Other Rare Conditions, and stores.
- Talk to Other Families With Kniest, SED, and SMD
- How to Search the World Wide Web (“surf the internet”)
- Find Papers On-line, Find medical articles for free
- Medical dictionary page.
- Skeletal Dysplasia (dwarfism) Clinics
- Clinical Trials
- Other Useful Medical Sites: Government Sites, General Research Sites
- Lists of questions for bring to medical appointments: back braces, surgery, and more.
- Special things to have around the house: clothing that fits, reachers, pedal extensions for driving, kitchen stuff, and more.
To search the web, start with a ‘search engine’ page. Type in what you are looking in, hit enter, and the search engine gives you a list of page to look at. If you need help please email us.
- Google, http://www.google.com is a comprehensive search engine. You can search the web, user groups, news, and images. Advanced search features similar sites and all sites linking TO a site. Google also contains sites by category.
- Yahoo, http://www.yahoo.com, is one of the oldest web search engines.
- To search on many search engines at once, use www.dogpile.com or www.metor.com. This is a powerful way to search the web.
- Altavista, http://www.altavista.com has a useful feature: the near command. It allows you to search for two words in the same document that are close to each other. Altavista also has a translator which you can use to translated to an from many languages!
- Search for listserves and newsgroups for people with dwarfism: Yahoo Groups.
- Keep up with the latest of search engines: http://www.searchenginewatch.com .
- Read Znet’s review of search engines, see http://www.zdnet.com/searchiq/reviews/ .
- If you need help using search engines please email firstname.lastname@example.org .
- The National Institute of Health, http://www.nih.gov/, has several invaluable resources as well as information in Spanish: http://salud.nih.gov/
- Public Access to Medline (Pub Med), over 9 million medical citations! http://www.ncbi.nlm.nih.gov /PubMed/. Pub Med is an outstanding resource. You can download abstracts of papers as well as order the entire document (for a fee). Please read the introduction section of this web page for some tips and a few suggestions before you start surfing the web for paper abstracts.
These pages were produced by medical providers who know a lot about skeletal dysplasias. They are a good source of a summary of current information, as well as a place to find the titles of related papers. These papers are technical.
Not all complications listed will necessarily occur: http://www3.ncbi.nlm.nih.gov/entrez/query.fcgi?db=OMIM&cmd=Limits
SED/SMD/Kniest research page list of conditions for other sources about Kniest, SED, and SMD in clear English.
Acknowledgements: Thanks to Prof Bob Brunner for most of these leads.
Note: all these sources were free at the time this web page was published. If you find this is no longer true or discover some new resources, please contact us. Thank you!
You can sometimes get copies of papers by emailing the authors. Email us if you need help emailing the author of a paper.
You may be able to get medical articles for free!
- Many copies of medical journals are available for free! See http://www.freemedicaljournals.com/. You may want to look up a journal article on PubMed, then see if you can get print it right out! You save time and inter-library loan fees.
- A fabulous resource is http://ajpendo.physiology.org/searchall/. You can search from hundreds of journals. The web page provides you links for all articles and notes which can be accessed for free. It is a great tool if you need articles right away and do not have much time to search.
- More free journals are listed at http://biovisa.net. Biovisa links to over 150 biology and medicine journals with free content online.
- More links to free medical journals are at http://www.bioone.org/. is a consortium to promote free access to a range of general biology journals.
- The Electronic Journal Miner http://ejournal.coalliance.org/ is hosted by a coalition of Colorado and Wyoming libraries. It lists a wide range of resources, from scientific journals to newspapers. It indicates what is available free.
- Stanford University is making a special effort to let people know about all possible free medical journals. Please see http://highwire.stanford.edu/.
- For a carefully selected, classic science papers, please see: http://www.jstor.org/.
- A good general resource for finding magazine articles is http://www.findarticles.com/PI/index.jhtml.
Note: all these sources were free at the time this web page was published. If this has changed or you have new free medical journal sites to send, please contact us.
- Skeletal Dysplasia Clinic in Akron, Ohio: www.akronchildrens.org/cms/site/75ec466dc67c481a/index.html.
There are a few short biographies of some of the patients who are part of the clinic.
- Alfred I. duPont Hospital for Children in Wilmington, Delaware: http://kidshealth.org/
Their site contains some interesting on-line clinical cases. Make sure to visit their Pediatric Orthopedic Unit http://gait.aidi.udel.edu/res695/homepage/pd_ortho/orthhome.htm.
- Greenberg Center for Skeletal Dysplasias, Baltimore, MD: http://www.hopkinsmedicine.org/greenbergcenter/Greenbrg.htm
The Greenberg Center web page has clinical summaries on-line and some good tutorials on genetics.
- International Skeletal Dysplasia Registry, Los Angeles, CA: http://www.csmc.edu/genetics/skeldys
The registry is part of the Cedars Sinai hospital and stores X-rays, tissue samples, and clinical information. They also assist with diagnosis of conditions, as well as collaborative publications.
- NEW center
Hospital for Special Surgery Skeletal Dysplasia Center.
Call (212) 774-7332 or email email@example.com for more information.
535 East 70th Street/New York, NY 10021.
HSS also provides a free physician referral service: Call (212) 606-1753 or 1-866-749-7047 (U.S. Only), 9 a.m. to 5 p.m., Monday – Friday.
- The Northern California Skeletal Dysplasia Clinic in Oakland, California:
This is a joint program between Kaiser Permanente Northern California and Oakland Children’s Hospital, http://www.childrenshospitaloakland.org/. This multispecialty clinic alternates between the Kaiser Oakland California Genetics department and Oakland Children’s Hospital.
- Skeletal Dysplasia Clinic in Texas: http://imgen.bcm.tmc.edu/molgen/cg/clinics/sd_index.html
The Skeletal Dysplasia Clinic meets on the second Friday afternoon of each month in the Orthopedic Suite in the Feigin Center, at Texas Children’s Hospital.
- University Children’s Hospital at the University of Zurich, Switzerland: http://www.kispi.unizh.ch/
This hospital provides assistance in diagnosis, tissue samples, and X-rays.
Other Useful Medical Sites
General Medical Sites
- http://www.peoplesmed.org/ “The People’s Medical Society is a nonprofit organization dedicated to educating YOU, the consumer, about health care and your medical rights.”
- A patient’s guide to the internet: http://www.patientsguide.com/. This site contains helpful information including support groups, medical glossary (the guide to understanding Greek and Latin roots of medical terms is especially helpful), and a list of medical references.
- Medscape, a site which lists health headline and links to many other sites, http://www.medscape.com/ is a good site to keep up with current headlines. It has a lot of links, including calendars of upcoming medical conventions. This site requires registration. This is a commercial site.
- http://www.doctorpage.com/ is a comprehensive site allowing you to find medical professionals and research health information. No site registration is required.
- Yahoo’s health page, http://dir.yahoo.com/Health/Diseases_and_Conditions/. Yahoo, in addition to being an on-line news provider, also has a lot of up-to-date health information. Yahoo provides both links to organizations and includes categories and brief summaries.
- The Office of Rare Diseases: http://rarediseases.info.nih.gov
Information about over 6,000 rare diseases. This is a federal organization focusing on using research on rare diseases as keys to understanding more common conditions. The ORD has links to information about genetics, patient support groups. patient travel, research and Clinical Trials, and research resources. The ORD also sponsors conferences. The ORD also has information in Spanish.
- The US Food and Drug Administration (FDA), http://www.fda.gov/ , regulates clinical trials for medicines and food safety. The FDA also insures the safety of medical devices and food labeling. This page has a handy index and a lot of valuable information.
- The Unites States Public Health Services, http://www.os.dhhs.gov/ , is the United States government’s principal agency for protecting the health of all Americans and providing essential human services, especially for those who are least able to help themselves. Their web page lists many government health agencies.
- The Centers for Disease Control and Prevention: www.cdc.com
- An interesting free journal: http://www.cdc.gov/pcd. This features some conditions, such as arthritis, that are common in people with Kniest, SED, or SMD.
- For information on health insurance, please see the advocacy page.
(Note, these lists still under construction)
- Questions about back braces.
- More question lists to come.
All photographs on this Web site are the copyrighted property of the individuals pictured, and have been posted with their permission. All rights reserved. To obtain legal copies of these photographs for any purpose whatsoever, email firstname.lastname@example.org.