Dr. Suess

"And will you succeed? Yes indeed! Yes indeed! Ninety Eight and Three Quarters guarenteed!"


Saturday, September 02, 2006

Pearls and Dreams

Pearls and Dreams The MDA is a constant source of research and keeping patients informed where research is going on regarding the disease that effects themselves or the ones they love. Currently, regardling Myasthenia Gravis, this is what the MDA has available for research:





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(Last Updated 8/15/2006)
Clinical Trials & Studies of Neuromuscular Disease - Selective Listing
Active Trials Completed Trials Postponed Trials Discontinued Trials
Search active Trials
Search Results:
Myasthenia Gravis (MG)
CellCept in MG (Duke, Roche, FDA)
CellCept in MG (Roche, Aspreva)
Creatine monohydrate -- safety in children with neuromuscular disorders (UCSF)
Mycophenolate Mofetil (CellCept) in Myasthenia Gravis
Clinical trials are experiments conducted using human participants that seek to determine the value of a potential treatment, such as a drug, dietary supplement or exercise program. Most trials compare a treated group of participants with a “control,” or comparison, group, which receives an inert substance (“placebo”) or a sham treatment.
Many trials are divided into phases, the first of which is usually quite small and almost always designed only to assess the safety of the new treatment and how well it’s tolerated. Phases 2 and 3 of a trial are larger and address questions of effectiveness and dose.
The term “study” implies either a trial or a more general research question under investigation, such as how many people with a certain set of symptoms have a particular genetic change or how parents cope with raising a child with a disability. Personally, I was excited to see these studies going. While I'm not eligable to participate in any of the studies, I've never been (my doctors always seem to have me on the treatments being investigated, therefore, not eligable for study) it is exciting to see that they are far enough to be in these stages of trial. My doctor often gets his treatment information from the MDA, and what they think is coming down the pike. I talk to myasthenics all across the country. Those of us who have doctors who follow the MDA protocol have better success, better treatments and are more knowlegeable about our disease than those who don't, even if we don't avail ourselves to the MDA clinics ourselves.

2 comments:

  1. ya know we just studied MG in class maybe i should just pull up your blog during my final????

    ReplyDelete
  2. OOOOHHH you didn't tell me you'd studied MG ... what did they tell you? What do you wanna know?

    When I was in the hospital one time, I had a nursing student that had just finished a semester, she'd spent one day on MG and 2 other diseases. The nursing instructor finished the day by saying "But don't worry about these diseases, they're so rare, you'll probably never meet anyone with them."

    YIKES ...tell the students to just erase everything they just learned why don't you! And by the way, the myasthenics of the world thank you ... NOT.

    We may be few, but we do exist lol.

    ReplyDelete