Hidradenitis Suppurativa Foundation News

As significant news occurs, HSF will post updates as quickly as possible.

  • On January 1, 2016, Alesa McArthur assumed the newly created role as Executive Director of the HS Foundation.
  • On March 4, 2016, Dr. Iltefat Hamzavi assumed the role as President of the HS Foundation.
  • On April 4th, 2016, Angela Parks-Miller, assumed the newly created role of National Coordinator of Advocacy and Support.

 

HS Foundation Participation at IDEOM (International Dermatology Outcome Measures)

New York, New York – October 15th, 2016

The HS Foundation National Coordinator of Advocacy and Support, HSF Physician Board Members, along with Hope for HS, represented the interests of patients and physicians at the IDEOM conference for HS.  Physicians specializing in HS treatment, along with six HS patients, HS Advocates and Industry were present to develop consensus on the domains to be used in outcome measures for HS.

Why was the IDEOM event important? Actually, it is more than important, it is a milestone for HS. Outcome measures are used in clinical trials. Clinical trials do not always mean trials of a drug, as this can relate to quality of life, surgery or procedures, drugs (topical, oral, injectables, infusions, etc), and even diet or alternative medicine. This group decides by means of a consensus on the standardized outcomes or endpoints that are looked at to determine results for a trial.

Establishing standardized tools for HS trials is a tremendous milestone. This shows that HS is being recognized as a disease that needs more research and needs agreed upon tools, with input from both physicians and patients, to get the most valuable data from a trial.

Now that the domains have been established, the tools within the domains can be developed. The HS Foundation and Hope for HS will continue involvement in the process of developing outcome measures for HS.

We would like to thank IDEOM for their diligent work in advancing knowledge of HS.

ideom

HS Working Group at IDEOM, New York, New York – October 15th, 2016