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.
What if I can't be there in person?
We understand there are many reasons families may be unable to attend our DESSH Clinic in person, but data collection is vital to further understanding DeSanto-Shinawi Syndrome. Therefore, we have made it possible for you to participate by contributing information directly to Dr. Shinawi's natural history study. Please read more about how to contribute to data collection efforts at Washington University below. A livestream, recording, and presentations from the family conference each year are availalable at www.desshclinic.com.
CONTRIBUTE TO RESEARCH AT
WASHINGTON UNIVERSITY
Opportunities exist to advance our knowledge and understanding of DeSanto-Shinawi Syndrome. The clinic at Washington University is collecting data for their research and The DESSH Foundation supports their work. We have created a form for patients to seamlessly share their information with these researchers. We hope you will consider contributing by providing your patient medical information.
A guide for DESSH families
Dr. Amanda Smith, a member of The DESSH Foundation's Medical Advisory Board and researcher at Washington University, authored this guide with helpful information about how patient data is used in clinical and pre-clinical research.
A consent to release your medical information
Should you wish to share your information with the researchers at Washington University it is imperative that you sign and attach this consent to the Medical Questionnaire.
A consent to release your photos/videos
Because a feature of DeSanto-Shinawi Syndrome is facial dysmorphisms, photos are beneficial to the research team. Should you choose to upload photos to the Medical Questionnaire, a signed media release form must accompany them.