Important Announcement!!

The FIRST Long-term Scheuermann's Disease Research Studies - Protocol Development - PLEASE SHARE

 

As we have excitedly announced before, The Scheuermann's Disease Fund is fortunate enough to be working with another charity, "Setting Scoliosis Straight", in developing the FIRST TWO COMPREHENSIVE LONG-TERM STUDIES EVER DONE ON Scheuermann's Disease.

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These studies consist of:

• First Study: An extension and longer term follow-up from a pre-existing Scheuermann's Disease Case Study done by "Setting Scoliosis Straight". This involved data collection (i.e. radiographic scanning, clinical info, Quality of Life Questionnaire) from different locations throughout the world from a previously screened and monitored control group. The goal being to determine the longer term effects, if any, on a person's quality of life who lives with Scheuermann's Disease. Investigator information available.

  • Principal Investigator: Baron Lonner, MD - Scoliosis Associates New York, NY

  • Secondary Investigators: Jason Lowenstein, MD - The Advanced Spine Center - Morristown, NJ
    Patrick Bosch, MD - UPMC Children's Hospital - Pittsburgh, PA

    • Michelle Marks, Executive Director of Research at "Setting Scoliosis" (www.settingscoliosisstraight.org) has been hard at work developing the initial protocols, which is an unbelievably difficult and time consuming job and we are greatly appreciative of all of her hard work.

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• Second Study: This will be a completely new study, utilizing the resources of both charities, that will REACH OUT TO PATIENTS WITH SCHEUERMANN'S DISEASE AROUND THE WORLD WHO HAVE SELF-SELECTED TO PARTICIPATE in this long-term follow up study. Patients will be asked to complete info regarding their initial treatment, ongoing treatment, and current status. All data will be self-reported BY THE PATIENTS (except radiographs such as x-rays, MRI's, CT Scans as these will be gathered by the internal data collection team). The data collected will consist of baseline images, most recent images, survey, Quality of Life Questionnaire, and relevant photos. The goal being to determine the incidence of revisions and or complications, degree of quality of life, and the degree and quality of ongoing treatment and care (i.e. incidence of stenosis, DDD, spinal failure).

 

Our work, at The Scheuermann's Disease Fund, is cut out for us as we have 2 major responsibilities:

• To help secure funding for these two studies.

• To provide the PARTICIPANTS FOR THE SECOND STUDY.

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We are working on the participant requirements and they should be done shortly.

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This is our time to make a difference about how everyone, the public and medical community, views this terrible disease and we will be asking everyone affected by this spinal deformity for their help.

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