Tuesday, December 21, 2010

Fingernails again/Atopic Dermatitis Research Network update

A nail-cutting night again for Voov. She's been mangling herself again. Not too terribly, but her hands have gotten all red and rough. On nail-cutting nights, at bathtime Hidden B closes the toilet lid and sits on the top with Voov in her lap, and cuts her nails with the clippers. Shmoop's job is to choose a pile of books for me to read to distract Voov. This he is very good at-- he picks the baby books, such as "The Going to Bed Book" or "Moo Baa La La La," rather than the ones he wants me to read when he gets HIS nails cut: National Geographic illustrated titles such as "Eurasia" or "The Mammals" (he likes the exotic animal pictures).

There's one issue with Voov that is somewhat disconcerting to us. Her back is, to put it delicately...um...a little hairy. There's no doubt that she's a mammal. Occasionally we wonder whether the steroids we're putting on her--which are relatively mild, but still known to have hormone-mimicking side effects--are doing something weird. Or that maybe the stronger steroids I put on myself are lingering on my hands and somehow getting into her system.

But the furry bits (we're talking downy, not out-and-out hirsute) bear no relation to where the steroids are going on. We haven't been putting steroids on all over her, which is when systemic effects are supposed to occur. And Hidden B tells me that her sister was always "downy," so maybe it runs in the family.
* * *
I was wondering what was going on with the Atopic Dermatitis Research Network, the $31 million multicampus NIH-funded consortium to investigate why eczema patients are vulnerable to MRSA. The ADRN is the new version of the Atopic Dermatitis and Vaccinia Network, a large study now wrapping up.

So I wrote to Donald Leung, the scientist in charge of the ADRN. (He's at National Jewish Health Center in Denver.) Judy Lairsmith, the ADRN's program manager, responded:
We are still working on setting up the Registry/Genetics protocol for the Atopic Dermatitis Research Network. This is a long process as you can gather. The protocol has to incorporate input from all the participating centers, plus the data coordinating center Rho, Inc., and has to go through several layers of approval at the NIH. Current plans are to start enrolling in February or March. Once the study is approved by NIH it must be approved by the [institutional review boards] at each of the institutions where subjects will be enrolled.
During my Ph.D. I had to get an animal experimentation protocol approved by a national laboratory. I filled out a lot of forms. My brain boggles at extrapolating from my experiment to the Kafkaesque bureaucratic demands of a 10-institution trial in human subjects. Judy must be a machine.

We'll have to wait a couple months yet to see exactly what trials will be done where. Participating institutions are all over the U.S. (list at the bottom of this link) so there's a good chance there's one near you.

I'm taking a break from blogging until January 3rd. Back just in time for New Year's resolutions! I know you'll be making some. Until then, enjoy the holidays.

3 comments:

  1. Thanks for your blog! I very much enjoy reading your posts and I am learning a lot from you. We are actually using nail files instead of a clipper to keep the nails of our 3 year old short and we feel that this is much easier that way and needs much less efforts of distraction. Happy holidays to you!

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  2. Interesting, thanks for the tip. I'll see what Hidden B thinks. Do the nail files remove enough material? We usually clip first and then file off the sharp edges.

    Caroline blogs at http://fightingeczema.wordpress.com/

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  3. Yes, the nail files remove enough material. In the beginning we used the small baby files we bought at baby-r-us, now we use regular ones. We always have several nail files lying all around the house and we check his nails daily and file as needed. That way it doesn't need much distraction because he is usually patient enough for the filing of one hand.

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