Thank you for your interest in joining a Poster Pub Crawl at the 2020 PeDRA Annual Conference. Registration is now closed. Please send us an email at info@pedraresearch.org with any questions.
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Guide to Engaging Patients at the 2020 PeDRA Annual Conference
Suz Schrandt is a patient and patient engagement advocate with a health and disability law background. She is the Founder and CEO of ExPPect, a patient engagement initiative aimed at putting skilled patient partners in the heart of healthcare innovation. Schrandt previously served as Director of Patient Engagement at the Arthritis Foundation, and as Deputy Director of Patient Engagement for the Patient-Centered Outcomes Research Institute (“PCORI”). Her career spans work in health reform, bioethics, genetic discrimination, and chronic disease self-management, as well as a long history in patient-led clinical training. Schrandt is one of nine voting members on the FDA’s inaugural Patient Engagement Advisory Committee, the Chairperson for the International Society of Pharmacoeconomics and Outcomes Research North American Patient Roundtable, and is an invited speaker at numerous US and international conferences. Schrandt received her law degree from the University of Kansas and has co-authored multiple peer-reviewed articles on
Characterization of Lipoprotein Composition and Function in Pediatric Psoriasis Before and After Treatment
Principal Investigator:
Amy Paller, MD
Northwestern University
Overview:
Psoriasis is a chronic inflammatory skin disease associated with early onset cardiovascular disease. Despite studies demonstrating high cholesterol, increased diabetes and
higher rate of obesity in psoriasis, these traditional risk factors only explain a fraction of total cardiovascular risk in psoriasis. One-third of the psoriasis patients start developing psoriatic plaques during childhood and studies have shown that the children with psoriasis have similar or higher risk for obesity and future problems with high cholesterol and diabetes. In fact, children have been shown to have abnormal cholesterol as early as age 13 years in psoriasis. However, little is known about how pediatric psoriasis severity affects cholesterol function, including its relationship with proteins involved in inflammation. Importantly, whether treatment of pediatric psoriasis early in the life leads to improvement in cholesterol function and overall lipoprotein
composition is unknown. Therefore, the goal of this proposal is to understand the effect of disease activity and psoriasis treatment on cholesterol and metabolic markers in pediatric
psoriasis.
Status:
This project was funded as a 2018 PeDRA and NPF Pediatric Psoriasis Challenge Grant and is currently underway.
PeDRA Publication Webinar
Lisa Arkin, MD presents the findings of a recent PeDRA study: Clinical and Histologic Presentation of Pediatric Reactive Granulomatous Dermatitis.
Lisa Arkin, MD is the Director of Pediatric Dermatology and Assistant Professor of Dermatology at the University of Wisconsin, Madison. She has been a member of PeDRA since it’s inception and has served on several committees. She is the principal investigator for several PeDRA studies and was recently awarded a PeDRA Research grant to support her efforts in working towards a precision-based treatment for facial port wine birthmarks. She is currently the Chair of the Early Investigators Committee and oversees the annual EI Forum at the PeDRA Conference and PeDRA Research Mentorship Program.
Castle Creek
Logo
Overview
Castle Creek Biosciences, Inc., a gene therapy company, is focused on delivering transformative therapies for patients living with rare and serious diseases with high unmet needs. They joined PeDRA as a Partner-Level member of the PeDRA Corporate Council in 2019 and moved up to the Bronze-Level in 2020.
Headquarters
Exton, PA
Valuable Links
Pfizer
Corporate Council Partner Pages
Corporate Council pages are available to PeDRA Members only. Please login or join PeDRA to access this content.
COVID-19 Web Resources for PeDRA Members
General information:
- CDC: https://www.cdc.gov/coronavirus/2019-ncov/index.html
- WHO: https://www.who.int/emergencies/diseases/novel-coronavirus-2019
- Johns Hopkins Coronavirus Resource Center: https://coronavirus.jhu.edu/map.html
Specific Organizations’ Response to COVID-19:
- AAP: https://services.aap.org/en/pages/2019-novel-coronavirus-covid-19-infections/
- AAD: https://www.aad.org/member/practice/managing/coronavirus
- ACR: https://www.rheumatology.org/announcements
- MDS: https://www.meddermsociety.org/covid-19-medical-inpatient-dermatology-responses-patients/
- International Organization for the Study of Inflammatory Bowel Diseases: https://www.ioibd.org/ioibd-update-on-covid19-for-patients-with-crohns-disease-and-ulcerative-colitis/
- British Society for Immunology: https://www.immunology.org/news/novel-coronavirus-content-free-access
- AMA: https://www.ama-assn.org/delivering-care/public-health/covid-19-2019-novel-coronavirus-resource-center-physicians
- ACGME: https://acgme.org/COVID-19
COVID-19 Literature:
- Wiley compiled literature: https://novel-coronavirus.onlinelibrary.wiley.com/
- University of Nottingham compiled literature: https://www.nottingham.ac.uk/research/groups/cebd/resources/coronavirus-resource/coronavirushome.aspx
Patient Care Resources:
Relevant COVID-19 Registries:
- COVID Acral Ischemia/Perniosis in children: https://redcap.chop.edu/surveys/?s=TR8FTHF9KW
- American Academy of Dermatology: https://www.aad.org/member/practice/coronavirus/registry
- Alopecia: https://securealopecia.covidderm.org/login/?next=/insight/
- Atopic Dermatitis: https://www.covidderm.org/login/
- Psoriasis: https://psoprotect.org/
- Hidradenitis suppurativa: https://hscovid.ucsf.edu/
- Connective tissue or vasculitis (not psoriasis): https://rheum-covid.org/
- Any pediatric patients who do not fit above: https://redcap.stjude.org/surveys/?s=37F8JCEWR8
Last updated: May 14, 2020