Medical Registries for the Lottery Winners

Has someone you know won the lottery ticket to a rare illness, disease or syndrome?  What now?  MDs rely on registries, a systematic collection of standardized data on a group of patients, to know how the illness progresses, what medicines work best.  These registries are especially important when your sweetie wins the lottery and there are only 1 in 100,000  or 1 in a million persons who have this problem.
Sometimes a registry can help the patient find current studies or clinical trials.  Such as the Rare Disease Clinical Research with the National Institutes of Health (NIH).  . Mostly, signing up for a registry will gather information for future patients and guide their medical care. Registries can be world wide such as NORD (U.S.), Eurordis (Europe), and CORD (Canada) who, together, have developed 10 Key Principals for Rare Disease Patient Registries.
The National Institute of Health ORDR (Office of Rare Diseases  Research) is working on gathering together individual registries in the U.S. and coordinating data for researchers. Here is a link to the ORDR registries they are working with thus far.
What a huge job. APPLAUSE for the NIH!
Privacy is an issue.  The registries I have reviewed all have a system to de-identify the patient. Reg4All allows patients to control what data is shared with researchers and is an interesting web site to review.
Syndromes as well known as Down Syndrome have a registry and as unusual as Usher Syndrome (leading cause of deaf-blindness in the U. S.)
So go Google, ask your MD, or the illnesses association and see if your illness has a registry.  Help find the medical solutions for your specific lottery-winning syndrome.
Other Web sites for registries and research.
researchmatchclinicaltrialsGlobal Rare Disease Patient Registry GRDR
A web site for Medical professionals who are interested in registries and collecting data.
http://project-redcap.org