January 2011 Update.
While the month is not yet over, we have experienced the loss of two of our members.
Jim Cotz passed away this month. Jim was a very active memeber of the HS community. He brought a smile to the face of many, and faith that things would get better. Jim passed away after a long battle with skin cancer. He will be sorely missed. Please remember Cecilia, Jims wife, and his sons in your thought and prayers.
We learned this week that Tammi Ferris passed away last Wednesday. Many of you knew Tammi as the compassionate and sympathetic voice on the other end of the HS=USA support phone. Please remember Tammi's family in your thoughts and prayers as well.
|Posted by rick on June 3, 2012 at 8:35 PM||comments (1)|
I am working on setting up the Documents Section as a respository for HS Clinical Trials, Research, Studies and related information and documentation. If you have any documents that we can add to the Repository, please forward them to me and I will include them.
|Posted by rick on May 27, 2012 at 11:40 AM||comments (0)|
Here is a new link to some work going on in France. There is also a good summary of a number of Clinical Trials.
|Posted by rick on April 28, 2012 at 11:40 AM||comments (9)|
NEW CLINICAL TRIAL!!! folks, here is the contact information for a new clinical trial for Humira. Call them if you are interested
Thanks for the call, sorry I was unavailable. The study we are conducting is in Troy, Michigan. It is listed on clinical trials.gov, study NCT01468207 if people want to see it there.
This is a research trial for adults with HS in at least 2 areas (both underarms or one underarm and one other area). They need to have been diagnosed at least one year earlier (will need documentation) and should have had an inadequate response to at least a 90 day treatment of oral antibiotics.
The trial is sponsored by Abbott and will study if Humira is effective and safe in the treatment of HS.
Participants are given either: 1. Humira every week; 2. Humira every other week; or 3. a placebo (no medicine). After 12 weeks, subjects are re-randomized to different arms, so that everyone will at some time receive active medication.
To get more details, please call 248-244-8448 and ask for the research department.
Thanks for your help.
|Posted by rick on January 24, 2012 at 3:40 PM||comments (6)|
Reference Number: 09-0725
Date Posted: 04/05/2011
hidradenitis, boils, abscesses, Nagele, 09-0725
WHAT IS THE PURPOSE OF THE STUDY?
The goal of this study is to find out what causes hidradenitis suppurativa. Hidradenitis suppurativa is a chronic skin disease characterized by recurring abscesses (boils) most commonly found under the armpits and in the groin area.
WHO IS NEEDED?
Adult patients diagnosed with hidradenitis suppurativa
WHAT IS INVOLVED IF I PARTICIPATE?
Duration:1 outpatient visit, approximately 30 minutes in length
Tests/Procedures:blood or saliva sample, physical exam, and questions asked
Risks:Risks will be discussed with volunteers as part of the informed consent process.
Benefits:There are no direct benefits. This research may create new tests, treatments, or cures for people with hidradenitis.
Compensation:A $10 gift card for time and effort is provided.
WHO IS THE PRINCIPAL INVESTIGATOR (DOCTOR)?
NAGELE, PETER, MD
660 South Euclid Avenue
Campus Box 8054
Saint Louis, MO 63110
WHERE WILL THE STUDY TAKE PLACE?
Washington University School of Medicine
Peter Nagele, M.D.
*** We encourage you to register with the RPR to be considered for additional or future trials that
you may qualify.
|Posted by rick on September 21, 2011 at 11:45 PM||comments (11)|
FDA ALERT.... BLACK BOX WARNING
Please see the attached link
|Posted by rick on May 15, 2011 at 3:34 PM||comments (19)|
I have posted this as an informational item only. We are attempting to vet this information for its authenticity. Once we have verified the information I will add it to the appropriate catagory.
Depending upon how you read this, there is some implication by the author that a "cause" for HS has been found in the geneome. If this proves to be true, then the door has been opened to for a possible cure. However, the study does not address the occurance of HS in individuals with no famly history.