PeDRA

Pediatric Dermatology Research Alliance

Cross-cutting Research

COVID Acral Ischemia/Perniosis in children

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Please help us collect important information. This is a survey for all health care professionals taking care of children who have developed acral ischemia/pernio or pernio-like changes in the setting of COVID-19 exposure. We are aware that the AAD is also collecting cases of dermatological changes in the setting of COVID and encourage you to fill out the AAD survey as well.

This survey will collect data only on acral changes noted in the pediatric population. The case report form should take 10 minutes to complete and there is a space for all comments at the end of the survey. There are no required elements so please complete as much as you can. No patient identifiers will be collected. We will collect your name and email address (if you volunteer this information) so we may contact you if we have any questions. All data will be de-identified and be kept confidential and stored on a secure REDCap server at the Children’s Hospital of Philadelphia. Researchers involved in data analysis will be allowed access to this data. This study tool/ survey was reviewed by the Institutional Review Board at Children’s Hospital of Philadelphia (IRB 20-017553) and an exemption was granted.

The registry can be completed by health care professionals from all over the United States and all countries. Patients should not enter their own cases.

Case REport Form

Please contact Leslie Castelo-Soccio, MD, PhD at castelosocciol@email.chop.edu with any questions.

An International Study to Develop A Patient-Reported Outcome Measure for Scars (The SCAR-Q), and to Determine the Psychosocial Impact of Scarring

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Principal Investigator:

Joel Fish, MD
The Hospital for Sick Children

Overview:

Beyond being just a permanent skin mark, a scar can influence quality of life, and alter a person’s view of themselves. However, healthcare providers often only assess a scar’s physical features. In children particularly, without probing, the true impact of scars may therefore go unrecognized. This project’s purpose is two-fold – firstly to complete validation of the SCAR-Q (a patientfocused scar-specific questionnaire), and secondly to evaluate the psychosocial impact of scars in children. Consented children
will complete the SCAR-Q before and after scar treatment. The scores will be used to determine the SCAR-Q’s responsiveness (its ability to measure change), and to quantify the psychosocial burden of scars. Ultimately, the SCAR-Q will allow better appreciation of patient feelings about their scars, while purposefully characterizing the psychosocial impact of scarring will inform clinical practice. Specifically, by understanding the mental, emotional, and social weight of scars, healthcare providers may
deliver improved patient-centered care.

Status:

This project was funded by a 2019 PeDRA Research Grant.

An Examination of the Dermatologic Needs of Sexual/Gender Minority Youth

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Principal Investigator:

Markus Boos, MD, PhD
University of Washington and Seattle Children’s Hospital

Overview:

Relatively little is known about the dermatologic needs of sexual and gender minority (SGM) persons, and no research has been performed specifically evaluating the needs of SGM children and youth. This is an observational, cross-sectional, survey-based study that will assess the dermatologic needs and concerns of sexual and gender minority (SGM) youth (lesbian, gay, bisexual, transgender, questioning/queer) relative to their cis-gender/heterosexual peers.  This project will directly address knowledge gaps in our understanding of the skin health of a historically vulnerable population, and will lay the groundwork for developing future studies addressing those dermatologic discrepancies identified in SGM youth.

Status:

Funded as a 2018 PeDRA Pilot Grant. Currently enrolling patients.

The Burden of Pediatric Skin Disease — the “Big Study”

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What is the study about?

We hope to better understand the burden of skin disorders in school-age children, and how these skin disorders affect a child’s personal and social perceptions. We want to study the relationship between the burden and how severe or visible the skin problem is.

Who is this study for?

This study will enroll children ages 8 to 17 years of age with chronic and highly visible skin conditions, as determined by the physician.

Both the child and participating parent must speak English and be able to complete questionnaires about the child’s skin condition, social experiences, and quality of life.

Status:

Data collection is underway with the target of 3500 enrolled patients and parents anticipated in early 2020.

Sites:

What will you do if you participate?

If you qualify and decide to participate, you will be asked to:

  • Complete one in-person visit at a local recruiting site
  • Complete questionnaires for both the parent (~15-20 minutes to complete) and the child (~10-20 minutes)
  • Have a brief physician-conducted clinical evaluation
  • You will receive $10 compensation

We hope that parents and children will consider completing some questionnaires to help provide these answers. Participation is entirely voluntary.

What should you do if you are interested in participating?

If you would like to learn more about this study, you can:

trial page
study Newsletters