Live Blog: Why You Should Join the First Pediatric Patch Testing Registry. Faculty: Sharon Jacob, MD
In this live blog from the Annual Fall SDPA Conference in Orlando, FL, Sharon Jacob, MD, presented a lecture called, “Why You Should Join the First Pediatric Patch Testing Registry.” Here are some of the highlights.
Dr. Jacob detailed the difference between registry studies and clinical studies. Registry studies are observational, while clinical studies are investigational. In general, a data registry is a “systematic collection of information on all the cases of a particular disease or other health relevant condition.” According to Jacob, “In a registry study we tell the physician to treat the condition however they want: as sponsors, we are passive observers, while in a clinical study we instruct the investigator to treat the condition in a certain manner: we are active researchers.” However, “the principles of ethics, data ownership, and privacy are the same for registry studies as they are for clinical studies.” Different types of registries include hospital, population, cancer, birth and death, public health, twin, procedure, treatment, exposure, and web-based.
Jacob explained that pediatric patch testing is either under-utilized, under-reported or both. The new Pediatric Contact Dermatitis (Population) Registry has been 10 years in the making. The goal of the registry is to, “Investigate and define – a silent epidemic as a cooperative collaborative.” The registry holds that children who suffer with ACD will also suffer with ACD as adults, that patch testing is safe and efficacious in children and that pediatric patch testing is done and under-reported.
The Pediatric CD Registry purpose is as follows:
- To increase the number of verified cases of contact dermatitis in children ages 0-18 years in the United States—identify the true incidence.
- Promote awareness of contact dermatitis in pediatric populations—by utilizing the data in the future for peer-reviewed publications.
- Assess and analyze the frequency of allergens associated with contact dermatitis from the data gathered.
- Improve standardization of protocols for patch testing used in U.S. children.
- Investigate for disparities in access to patch test care and evaluation—by evaluating demographic variables associated with contact dermatitis diagnosis.
- Assess who is providing contact dermatitis and patch test services within the U.S.—by assessing the frequencies of provider types.
Jacob closed her lecture by encouraging all those present to join the Pediatric CD Registry and begin to submit pediatric patch test data.
Image: Garry Knight