2015 IDEOM Fall Newsletter
Alice Gottlieb, MD, PhD – IDEOM Founder and Chair
Exciting things are happening at IDEOM. The Delphi went out to both patients and health care providers and other stakeholders this month. These results will be presented at the Annual Meeting on March 2, 2016 in Washington DC. Formal invitations to the meeting will be emailed soon so please keep an eye out for them. At the Annual meeting, we will use our interactive devices to pick domains for psoriasis and form workgroups in order to review and develop outcome measures that satisfy the needs of all stakeholders. Once again, Dr. Kendall Marcus has agreed to speak at our meeting. IDEOM is working with the NPF to meet with payers. IDEOM would like to understand what payers want to assess quality of treatments and health care providers. NPF representative, Leah Howard, will present the results of our meeting with payers at the annual meeting in Washington DC. Finally, we will start work on our second disease, hidradenitis suppurativa, at the 2016 meeting.
We are growing in size, getting stakeholders from all over the world and new pharmaceutical members. 2016 will be a great year! Thank you for your support.
My name is John Latella and I was diagnosed with psoriasis in 1964 and with psoriatic arthritis in 1976. I’m still a patient because there is no cure for psoriasis, so I have learned to live and adapt to life with psoriasis. In 2013 I was invited to attend my fist IDEOM meeting in Toronto, Canada and from that point on I saw the clarity of the mission and came away with a renewed sense of desire to help others who had been diagnosed with psoriasis. In subsequent meetings I began to see the formation of a set of ideals that brought all of us (patients) into the forefront of helping to make a difference. By participating in discussions on Delphi item inclusions, IDEOM realized the benefit of patient interaction with researchers and clinicians. Recently, after submitting a letter of interest, I was asked to be the patient stakeholder on the IDEOM Board of Directors and I was humbled by the prospect of it and I saw it as opportunity to continue to help those who will be diagnosed with psoriasis in the future. I have volunteered with the National Psoriasis Foundation for many years as an Advocate, Mentor and Ambassador and my inclusion into IDEOM was another opportunity to be of greater help to others. I look forward to the challenges and vow always to put my best effort forward.
Thanks to Our Crporate Sponsors & Donors
• To establish patient-centered measurements to enhance research and treatment for those with dermatologic disease
• Perspectives of patients, health economists, payers, physicians and regulatory agencies are included from the onset
• IDEOM’s goal is to establish validated and standardized outcome measures that satisfy the needs of all stakeholders and can be applied to clinical research and clinical practice