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Throughout my career, I have been a strong proponent of medical research through consumer advocacy and educational activities. But recently, I had the opportunity to actually participate as a research subject!  As an enrollee in the Illinois Women’s Health Registry, my health profile matched the criteria that a researcher was seeking for an osteoarthritis (OA) study.  The project is called the MAK-3 Study and its purpose is to explore whether people with stronger hip muscles have a slower rate of OA progression and whether different factors of knee instability are related to knee OA progression.
My camera flash picked up the reflector balls/markers taped to my joints --- could this be the new look in jewelry!!
My Registry profile included “knee pain” which flagged me as a potential match for this study.  I gave permission for the Registry staff to give my name to the research coordinator for the study and I was selected!  The study is being done at Northwestern University and it involves 2 or 3 visits for a variety of non-invasive evaluation procedures.   They would be done at baseline (this past month) and repeated two years later.   This is what they call an “observational” study.  It will not directly benefit me, but it would help scientists better understand this condition and the factors that influence it.  Since my family was riddled with osteoarthritis, I wanted to participate.
I chose to do the evaluations in three rather than two sessions because it fit my work schedule better.   At the first session, I filled out numerous surveys about pain, my medications and my exercise habits.    A physical therapist watched me walk down the hall several times to observe my “gait”.    I was then hooked up to equipment that measured muscle strength ( it looked like much of the equipment you see at your local gym, just with gauges to measure strength). They asked me to perform some typical knee and hip movements like leg lifts and recorded my muscle strength.  After that a physician examined my legs and hips and reviewed my medication history.  I was asked if I would provide an optional urine sample that would be stored to eventually be used to test any new biomarker tests for OA that may be developed.  I was provided a diary where I recorded by physical activity for a week at home.
At the second session I met the team in a research lab that was equipped with sensors along the ceiling and a hollow floor that ran wires to a lot of computerized equipment. They taped small reflective balls to my joints and had me walk up and down the room many times while the sensors picked up the signals from these balls  (see picture!)    When I finished, the researcher showed me what the sensors were detecting.    The computer screen showed a stick figure (me) with multicolored dots on my joints (representing the reflecting balls) moving across the screen.   They were recording my alignment and gait.   It was very interesting to see my stick figure move across the screen.    Once they pulled off the sensor balls, they measured the speed of my normal walk by making me walk down a hallway and timing me.
A few weeks later I went to a different location where I had a special x-ray taken that included, on one film, my ankle, knee and hip joint to see how they lined up.  This was followed by rather long MRIs on each of my knees.   This was the hardest (but tolerable) part of the study, I needed to stay still for 40 minutes per knee.   At least they gave me headphones and my head was outside the MRI machine where I watched a bird trying to get through the window.  Throughout this experience the research coordinator explained what would happen and why it was done.   Since I was going to physical therapy for my knee at the time, it was helpful to have her explain where they saw strengths and weakness in my hips and knees.  It made me appreciate why the PT was having me do certain exercises on these related muscle groups.
Finally, the best part of this experience was knowing that I may actually be contributing to science, with little interruption (total 7- 8 hours) in my life.   They will have me back in two years to repeat these tests and determine the status of my OA symptoms.  By the way, I was given a stipend to cover my expenses like parking—and  just enough  to take a few girlfriends out for a nice lunch and get them to join the Illinois Women’s Health Registry!

As recently reported in BBC News and Human Reproduction, a mother in Denmark has become the first in the world to give birth to a second child after an ovary transplant operation. Stinne Holm Bergholodt was diagnosed with Ewing’s sarcoma at age 27 in March 2004. She made the decision to freeze her ovarian tissue before cancer treatment to allow her the option to pursue biological motherhood in the case of infertility. A year and a half later, Mrs. Bergholdt’s ovarian tissue was transplanted back into her own body with the hope that this procedure would restore her reproductive capacity. Following mild ovarian stimulation, Mrs. Bergholdt gave birth to normal healthy girl, Aviaja, in February 2007. Assuming she would need ovarian stimulation for a subsequent pregnancy, Mrs. Bergholdt returned to her fertility clinic in January 2008, expressing her wish for another child. To her surprise, a pregnancy test turned out positive, indicating that she had already conceived naturally, without any treatment. Her second daughter, Lucca, was born in 2008.

Mrs. Bergholdt and her two children, both born from a single ovarian tissue transplant

This is the first documented report of a woman who has given birth to two healthy children (in two separate pregnancies) as a result of one ovarian tissue transplantation. This study demonstrates that transplantation of just six pieces (around 15-20% of one entire ovary) of ovarian cortex tissue can result in the production of fully mature oocytes for a period exceeding 4 years.  Taken together, these results extend the number of children born as a result of ovarian tissue transplant to nine globally and encourage a continued effort to develop this technique as a valid method of fertility preservation.

To learn more about fertility preservation options at Northwestern (including ovarian tissue transplant), click here

The BBC article chronicling this story can be found here

The article in Human Reproduction can be found here

The Illinois Women’s Health Registry is currently featured on the Northwestern University homepage.  To read the latest article about the Registry go to http://www.northwestern.edu/newscenter/stories/2010/03/registry.html.  And you if you live in Illinois, sign up for the Registry!

Vaginal birth after cesarean (VBAC) is the delivery of a baby through the vagina after a previous cesarean delivery. For most of the 20th century, clinicians believed that once a woman had undergone a cesarean, all of her future pregnancies required delivery by that procedure as well. In the 1980s, vaginal birth after cesarean (VBAC) also began to be considered a viable option for these women. Since 1996, however, VBAC rates in the United States have consistently declined, while cesarean delivery rates have been steadily rising. What accounts for these changing practice patterns? An improved understanding of the clinical risks and benefits of both procedures, and how these risks interact with legal, ethical, and economic forces to shape provider and patient choices about VBAC, may have important implications for health services planning and informed decisionmaking.
An impartial, independent, Consensus Development Conference panel will hold a press telebriefing to discuss their findings and implications for the public following the NIH Consensus Development Conference on Vaginal Birth After Cesarean (VBAC): New Insights, March 8-10, 2010. The panel’s statement will incorporate their assessment of the available evidence from a systematic literature review, expert presentations, and audience input to inform patient and provider decisions regarding VBAC.
This blog site will post a summary once the guidelines are released.