What is the DESSH Clinic?
The clinic involves patient visits with specialist doctors who collect and store patient data to inform clinical research of the syndrome. The benefits are two-fold. First, the data collected will continue to be measured through follow-up interviews and/or visits, creating a natural history of the syndrome over a long period of time. Second, the clinic will give specialists the opportunity to treat many DESSH patients, creating DESSH "experts" in their field. The clinic includes an opportunity for patients to provide blood and/or tissue samples to facilitate pre-clinical research. Finally, there are educational conferences with speakers for parents in attendance, and opportunities for social events among DESSH families.
Why Participate?
As an entirely patient-led organization, it is our efforts that find the best treatments and lead to the best outcomes. Patient data is needed to advance DESSH research efforts. Dr. Amanda Smith, member of The DESSH Foundation's medical advisory board and scientific researcher, created a guide to help all of us understand why research is important. It is the Foundation's hope the Research Guide will motivate caregivers and patients to consider the impact participating in the DESSH Clinic can have have towards managing, treating and ultimately curing DESSH.