Organizational News:
Background, successes and areas of focus can be found in the organization’s Annual and Update Reports.
Report of PeDRA 2016 Activities
2016 Update Report
2013-2014 Report
PeDRA published the PeDRA Post, PeDRA’s twice yearly e-newsletter, which tracks progress being made with studies, highlights patient advocacy organizations engaged with PeDRA, and profiles special donors. PeDRA also offers educational opportunities for investigators.
PeDRA Published Studies
> View Studies
Title: Pediatric Psoriasis Comorbidity Screening Guideline
Citation: JAMA Dermatology; Published online May 17, 2017; 10.1001/jamadermatol.2017.0499
Link to Publication
Title: Pediatric Skin Cancer: Patient Perspectives
Citation: Pediatric Dermatology; 2017; 34(2):187-188; 10.1111/pde.13135
Link to Publication
Title: Safety of Systemic Agents for the Treatment of Pediatric Psoriasis
Author: Inge M. G. J. Bronckers, MD
Citation: JAMA Dermatology; 2017;153(11):1147-1157; 10.1001/jamadermatol.2017.3029
Link to Publication
Title: First Guideline on Pediatric Psoriasis Comorbidity Screening
Author: News Author: Veronica Hackethal, MD; CME Author: Laurie Barclay, MD
Link to Publication
Title: Prescribing practices for systemic agents in the treatment of severe pediatric atopic dermatitis in the US and Canada: The PeDRA TREAT survey
Authors: Totri CR, Eichenfield LF, Logan K, Proudfoot L, Schmitt J, Lara-Corrales I, Sugarman J, Tom W, Siegfried E, Cordoro K, Paller AS, Flohr C.
Citation: J Am Acad Dermatol; 2017;76(2):281-285; 10.1016/j.jaad.2016.09.021
Link to Publication
Advocacy
> PeDRA Position Papers
PeDRA advocates for better access to treatments for children with dermatology diseases. Read PeDRA’s position statement submitted to the FDA on patient-focused drug development for alopecia areata: PeDRA position on alopecia areata drug development and the National Alopecia Areata Foundation’s statement: NAAF position on alopecia areata drug development
PeDRA advocates for better access to treatments for children with dermatology diseases. Read PeDRA’s position statement submitted to the FDA on patient-focused drug development for psoriasis: PeDRA position on psoriasis drug development.
The FDA has announced publication of the Psoriasis Voice of the Patient report that summarizes patient input from the March 17, 2016 FDA Patient-Focused Drug Development meeting on psoriasis. PeDRA clinician-investigators made comments at the meeting, as did a PeDRA pediatric patient, and provided the psoriasis position statement referenced above. The FDA report can be found here: http://www.fda.gov/ForIndustry/UserFees/PrescriptionDrugUserFee/ucm368342.htm.
In 2015, PeDRA testified at an FDA hearing on developing atopic dermatitis systemic treatments for children. In addition to testifying, PeDRA developed a position statement, endorsed by several organizations, supporting the inclusion of children in appropriate clinical trials for these treatments. Read the position statement here.
In 2015, PeDRA provided leadership with the NIH on the question of advantages in using a central IRB for multisite studies. The PeDRA position outlined how a central IRB can eliminate redundant work efforts, streamline research and encourage collaborative work. Read PeDRA’s position statement here
