Pompe Registry

The biopharmaceutical company will provide first-step Pompe testing (measuring GAA levels in blood) if an MDA clinic physician suspects the disorder

posted on June 10, 2013 - 9:35am
Pompe disease (acid maltase deficiency, or GAA deficiency) shares symptoms with several other disorders and, in the absence of specific testing, can sometimes be confused with these other conditions.

Should you sign up with a research registry about your disease?

posted on November 1, 2006 - 1:42pm
QUEST Vol. 13, No. 6
It seems as if everybody wants information about you these days. Try to get that rebate the salesman promised on your new computer, and the company wants to know how old you are, how much money you make and whether you went to college. Phone surveys want to know what you think of your congressional representative, whether you’re planning to sell your house and what radio stations you listen to.