Research Toolkit
Having been built with the intention of creating collaborative networks to better understand, prevent, treat and cure dermatologic diseases in children, PeDRA provides support for groups of two or more investigators collaborating on approved research studies (“PeDRA Studies”). This Research Toolkit includes an overview of the collaborative research process, an overview of the support that PeDRA provides at each stage, and links to external resources intended to help PeDRA Studies get off the ground and succeed. Click the links below to jump directly to a content section.
To connect with PeDRA’s research support offerings or learn more about the resources described, email PeDRA’s Research Programs Manager.
Turning an Idea into a Study
A day in the life of a PeDRA investigator has no shortage of unique observations or novel ideas. Where things might get more challenging is in turning an idea or an observation into a hypothesis-driven research study, fruitful long-term registry, or meaningful case-series. PeDRA is here to help you make this transition, while also exposing you to promising new ideas from colleagues, patients, advocates, and industry partners.
PeDRA Can:
- Provide feedback on project ideas and early-stage proposals.
- Assist with preliminary literature reviews and landscape assessments.
- Connect you with other PeDRA members, including experts in the field and active working groups.
- Connect you with patients, families, advocates, and industry partners.
- Connect you with statisticians and other expert resources at your host institution.
- Help you get involved at meetings and conferences to make connections and develop ideas.
Resources:
- PeDRA website:
- Annual Conference
- Education
- Mentorship Program
- Working Groups
- Discussion forum
- Paper: From ideas to studies: how to get ideas and sharpen them into research questions
- PeDRA’s Patient Engagement Award from PCORI
Building a Team
PeDRA wouldn’t exist if you could execute every study on your own. It’s important that studies are supported by teams big enough to collect necessary data on an appropriate timescale, and that they account for the expertise and resources (e.g. statistics) necessary to do a high-quality study. At the same time, it’s important to limit team size to minimize regulatory and administrative burden, control the complexity of correspondence and publication, and preserve continuity over lifetime of a project.
PeDRA can:
- Connect you with potential collaborators and active working groups relevant to your project.
- Connect you with statisticians and other expert resources at your host institution.
- Alleviate the burden of team correspondence by sending group emails, tracking contact information, and connecting with administrative assistants and research coordinators.
- Share opportunities to collaborate on the PeDRA website, in a searchable study locator, in monthly emails, and by social media.
- Help you establish new data use agreements and contracts between institutions
- Connect you with pre-existing arrangements between institutions to streamline paperwork.
Resources
- PeDRA
- Membership
- Annual Conference
- Working groups
- Active studies
- Study locator
- Paper: Advice for running a successful research team
- Blog post: Building Effective Teams in the Clinical Trial Schematic
- Institutional partnerships:
Designing your Study and Setting a Timeline
Design your study, set goals, and establish a project plan to execute your study on a realistic timeline, without being overly ambitious. This will establish a foundation for your project and help you communicate with collaborators, funders, and other stakeholders. But be ready to adapt, evolve, and roll with the changes. Having a plan will help you identify and respond to course changes. Resist the urge to say you’ll do too much too quickly – it’s better for team morale and funder relationships to over-deliver on a reasonable promise.
PeDRA can:
- Help you conceptualize a feasible study design and draft a project plan and timeline.
- Create a Basecamp project (or other preferred method) for you to track timelines and deliverables
- Help you navigate course changes while keeping collaborators and funders in the loop.
- Provide administrative support that allows you to focus on the research.
Resources:
- PeDRA:
- Education
- Central research coordinator
- Project tracking
- Website: Types of study designs
Getting Funded
While some projects can be done with little or no funding, this is rarely the case. Your project will have a better chance of succeeding with appropriate financial resources. Adequate funding will allow you to protect time for research, access the latest equipment and technology, and make your project a priority in the eyes of collaborators, institutions, and staff.
PeDRA can:
- Fund new projects through one of PeDRA’s competitive grants and awards programs.
- Fund ongoing PeDRA Studies through non-competitive Study Support Grants
- Connect you with external funding opportunities listed on the PeDRA website and shared by email or social media
- Provide letters of support to potential funders (dependent upon approval).
- Strengthen proposals by including PeDRA membership in your biosketch and PeDRA involvement in your project narrative.
- Connect you with program officers and decision makers at NIH, patient advocacy organizations, and industry partners.
- Connect you with education, mentors, and peers to help strengthen and refine proposals.
Resources:
- PeDRA:
- Grants and Awards
- Mentorship
- Annual Conference
- Focused Study Group pages – disease specific funding opportunities
- Website: NIH Funding Opportunities
Getting Regulatory Approval
When in doubt, assume that you need regulatory approval. Studies involving human subjects require IRB/REB (or equivalent) approval or exemption, and studies involving animals require IACUC (or equivalent) approval. PeDRA can help you understand your options and requirements, navigate institution-specific regulatory offices, and even help you prepare the paperwork.
PeDRA can:
- Help you understand regulatory options and requirements, offer recommendations, and answer questions.
- Help you prepare paperwork for regulatory review.
- Connect you with the training required for investigators and staff conducting approved research.
- Help you navigate institutional offices. PeDRA maintains a database of institutional offices and contacts.
- Remind you when it’s time to renew your IRB or update your training.
Resources:
- PeDRA:
- Education
- Central research coordinator
- Website: Smart IRB
- Website: Office for Human Research Protections
- Training: Good Clinical Practice
Gathering Data
The act of gathering data might seem simple and straightforward. You have eager collaborators and no shortage of subjects flowing through your clinic. But be careful! Plan ahead and test your processes so that the data you gather is clean, complete, and usable for the project you’re doing as well as secondary analyses in future. Work with your team to make sure processes are consistent and consult with expert statisticians early and often.
PeDRA can:
- Help you build a team to gather the data you need on an appropriate timeline
- Help you establish appropriate data use agreements between institutions.
- Connect you with statisticians and other expert resources at your host institution.
- Help you recruit human subjects (with necessary approvals) by:
- Soliciting referrals from PeDRA members via web, email, or at the Annual Conference
- Connecting you with patients, families, and patient advocacy organizations.
- Providing you with education on best practices for patient engagement in research.
- Test and refine data collection instruments.
- For surveys – Disseminate approved surveys via email to PeDRA members
Resources:
- PeDRA:
- Education
- Surveys
- Central research coordinator
- Study locator
- Active studies
- Website: NIH Clinical Research Trials and You
Ongoing Communication and Dissemination
It’s important to keep collaborators, funders, and interested stakeholders connected and informed over the course of a study. This is even more significant in cases (like most PeDRA Studies) where study duration is long, collaborators are many, email inboxes are cluttered, and schedules are packed with clinic duties and multiple ongoing studies. PeDRA can streamline and centralize your efforts to communicate with necessary people and disseminate important events and outcomes. All you need to do is keep us up to date via brief phone calls or the occasional email.
PeDRA can:
- Help you communicate with a broad audience via the PeDRA website, eblasts to a listserv of more than 500 members and stakeholders, and at the Annual Conference.
- Help you communicate with specific groups (like PeDRA members, working groups, or project teams) via Basecamp, monthly membership eblasts, focused emails, and teleconferences.
- Connect you with new audiences via connections with patient advocacy organizations and other PeDRA partners.
Resources:
- PeDRA:
- Active studies
- News
- Education
- Central research coordinator
- Paper: Communication is the Key to Success in Pragmatic Clinical Trials in Practice-based Research Networks (PBRNs)
- Article: Best practices in clinical trial communication
- Blog post: The importance of communication in clinical research
Data Analysis
Data analysis takes expertise, technical resources, and an appreciation for the audiences who will be interested in your methods and your outcomes. Consider the layperson, the peer-reviewer, the methods expert, the content-area expert, and the audience of your target journal. Avoid bias, stay transparent, and be responsible with your analyses even if what you learn may be surprising or contrary to your hypothesis. PeDRA can’t do your stats for you, but it is here to connect you with people who can (and to help you pay them) and can provide another set of eyes on your methods, results, and interpretation.
PeDRA can:
- Connect you with statisticians and other expert resources at your host institution and at the Annual Conference.
- Provide funding for statistics support through non-competitive Study Support Grants
- Connect you with PeDRA members with statistics expertise and experience doing similar analyses.
- Connect you with education to help you analyze data and/or better understand the methods and outputs of expert statisticians.
Resources:
- PeDRA:
- Education
- Central research coordinator
- Software: The R-Project for Statistical Computing
- Article: Statistics in Peer-Review
Publication
Publications may arise multiple times over the lifetime of a project. PeDRA is here to streamline and support this process and to let the world know that your paper is out there by sharing on the PeDRA website.
PeDRA can:
- Track deadlines and manage communication between authors via email, Basecamp, or other preferred method.
- Serve as a single point of contact for the lead author throughout the process of writing and revising. PeDRA will collect and compile edits from multiple authors and keep track of manuscript versions.
- Provide lower-level editing and/or higher-level critical review of your manuscript before it goes to peer-review, or after it’s been returned with reviewer comments.
- Connect you with expert mentors and colleagues to read and comment on your manuscript.
- Collect and compile signed authorship, conflict, and copyright transfer forms from all authors.
- Prepare and double-check all submission materials before they’re sent for review.
- Post a hyperlink to your paper on the PeDRA website and disseminate by email and social media.
Resources:
- High resolution PeDRA Logo
- PeDRA Authorship Guidelines
- PeDRA:
- Central research coordinator
- Published studies
- Annual Conference
- Mentorship
- Article: 7 Steps to Publishing in a Scientific Journal
- Letter by Steve Katz, MD, PhD: Communicating Science to the Public: Context and Curiosity
- Scimago Journal Rankings
- Website: Choosing a Journal for Publication
Acknowledging PeDRA (papers, abstracts, posters, presentations):
To acknowledge PeDRA simply name “Pediatric Dermatology Research Alliance (PeDRA)” in the acknowledgment (or funding, if applicable) section of an abstract, poster or paper, or on the final slide of a presentation. When appropriate you are also encouraged to acknowledge your working group, project team, or specific individuals. Recommended language:
- Financial Support
- “This project was (partially) funded by a XXX grant from the Pediatric Dermatology Research Alliance (PeDRA).”
- PeDRA Study
- “This study/project/review was developed through multi-site collaboration supported by the Pediatric Dermatology Research Alliance (PeDRA).”
- Presentation (poster, oral) at PeDRA Annual Conference
- “This work was presented at the 20XX PeDRA Annual Conference.”
- Please include a high-quality image of the PeDRA logo if space allows.
- Download PeDRA’s Award Acknowledgement slide. (Available as a PDF here).
Spread the word about PeDRA and acknowledge our support publicly. Investigators should acknowledge PeDRA whenever presenting results from PeDRA Studies, PeDRA Research Grants, or other projects that benefited from resources or opportunities made available by PeDRA. This applies to all abstracts, posters, presentations, and papers.
View PeDRA’s Grants and Fellowship Communication Guidelines here.
Identifying the Next Study
As long as patients and families are in need there will be a need for research. Use your experience conducting one study to launch into the next. Build on the strengths of your team, observations you made, new techniques you may have mastered, and regulatory and contractual arrangements you already have in place. Or go back to the drawing board and start fresh. Your connection to PeDRA will help ensure that your studies are part of an ongoing continuum that leads to the improvement of patients’ lives.
PeDRA can:
- Get your wheels turning through discussions with colleagues and other important stakeholders at the PeDRA Annual Conference and throughout the year.
- Keep you connected to co-investigators and a working group that keeps the momentum going even after a study ends.
- Keep you connected to patient stakeholders and industry partners, who might ask important questions and suggest novel ideas.
- Support you from beginning to end of this toolkit when the time comes to launch your new study.
Resources:
- PeDRA:
- Toolkit
- Annual Conference
- Working groups
- Discussion forum
- Toolkit
Last updated June 2021.
