CARRA Newsletter-November 2017 Issue 1
When Kyle Phillips joined the Children's Hospital Colorado site in December 2016 as the CARRA Registry Coordinator, he was both new to CARRA and new to research. The site had been activated for 3 months and had enrolled only one patient. Wow things have changed in just a few short months! With Kyle on board to help enroll about 2 patients each week into the CARRA Registry, Colorado has shot from 52nd to 8th in terms of weekly enrollment rate, and has expanded study participation to include all sub studies and bio sample collection. Children’s Hospital Colorado now has 89 patients enrolled in the Registry, 9 patients enrolled in STOP-JIA, 2 patients enrolled in FROST, and 5 bio samples collected. Kyle works on 5 other studies and spends about 50% of his time on the CARRA Registry. What makes Kyle so successful, you might ask?
According to site PI, Katie Moore, “Kyle is an absolutely amazing team player. He consistently goes above and beyond the call of duty, and always with enthusiasm! He establishes fantastic rapport with patients and families, and personally accompanies them to the lab to ensure nothing goes wrong with bio sample collection. There was a weekend when we had a new systemic JIA patient who would have been discharged prior to Monday, and Kyle came in over the weekend to assist me with enrollment in FROST. We are lucky to have him on our rheumatology team here in Denver!”
In this Issue...
FROST is the CARRA systemic JIA CTP comparative effectiveness study. We are falling far short of our enrollment goals, having enrolled only 19 of the 200 patients needed in the past year. In order to complete enrollment by 2020, we need to enroll 5 patients per month. We need ALL site investigator clinicians, including FELLOWS to be aware of this study and enroll every new systemic JIA patient possible. Successful completion of this study is critical to our understanding the optimal treatment of systemic JIA patients.
It’s challenging to enroll these patients, especially when many patients are diagnosed while hospitalized, so it’s important that the fellow or clinician seeing the patient makes your research coordinator aware that there is a potential patient to enroll in FROST before the patient is discharged.
Here are some important FROST facts you may not be aware of:
- Patients may be enrolled if the disease onset is prior to the 19th birthday (not 16th)
- Patients may be enrolled if it is within 72 hours of their initial treatment (although enrollment PRIOR to treatment is much preferred)
- FROST is an observational study of standard of care treatments. The CARRA Registry consent is all that is needed.
"As a patient partner on the FROST study team, I understand the burden of enrolling patients and all the challenges at the site level. However this study is SO IMPORTANT to patients and families! I cannot put into words how we parents struggle with selecting treatments for our children. FROST has the opportunity to provide information that is vitally needed for families and clinicians to make educated treatment decisions. The entire study team (including patients and parents) is available to you all to help find ways to overcome these issues, so please reach out to us."
Vincent Del Gaizo
Did your site previously decide not to participate? We will be contacting you to see if you might now be interested.
We Want to Hear from You
- How often have you not enrolled patients because you have had to begin treatment of patients who did not fulfill the FROST enrollment criteria?
- What are other reasons why patients have not been enrolled?
- Do you have suggestions on how we can improve enrollment?
- Do you have any questions or concerns we can address?
If you or your coordinator have questions about the FROST enrollment process, please contact the DCRI team ([email protected]).
The 2018 CARRA Annual Scientific Meeting will take place in Denver, CO April 12-15, 2018.
|Upcoming Dates to remember|
|Abstract Submissions Open:||COMING SOON!!|
|Abstract Due Date:||January 22, 2018|
|Pediatric Resident Program Applications Due:||January 26, 2018|
|Registration Opens:||February 1, 2018|
|Registration Closes:||March 26, 2018|
Keep an eye on your inbox for announcements about these and other Annual Meeting related updates. Or, visit the Annual Meeting page of the CARRA website https://carragroup.org/annual-meetings/2018-annual-meeting
If you have any questions about the Annual Meeting, please contact CARRA Meetings & Membership Manager, Nicole Dahms at [email protected] or 414-918-9822
The standard operating procedures (SOP) for blood biosample collection in STOP and FROST are now available on the CARRA wiki. https://wiki.carragroup.org/x/TABYAQ
The SOP workgroup was formed at the Translational Research and Technology Committee (TRTC) sessions at the CARRA 2017 Annual Scientific Meeting.
To facilitate the standardization of blood and tissue processing across the CARRA network.
Chair: Halima Moncrieffe, Cincinnati Children's Hospital Medical Center
Advisor: Anne Stevens, Seattle Children's Hospital
Members: Kimberly Lewis, Dell Children's Medical Center; Sue Thompson, Cincinnati Children's Hospital Medical Center
Suggestions? Please contact Halima Moncrieffe ([email protected]).
The first Registry Site Feedback Reports were sent out on November 10! Check your inboxes!!
- The Registry team at University of California, San Francisco for enrolling their 4th FROST patient!
- Hackensack University Medical Center for enrolling the project’s 60th PEPR patient!
- The Registry team at Seattle Children’s Hospital for enrolling their first PEPR patient!
Enrollment Update (as of 11/13/17)
Announcements and Reminders
Apply for data NOW!
The 2018 CARRA Annual Meeting abstract deadline is January 22. Data and sample share applications are now accepted on a rolling basis and decisions regarding your application will be returned to you in 4 weeks or less. Investigators need to apply now to receive your data in time to prepare and submit an abstract by the deadline. See important information below:
What Data are Available:
- New CARRA Registry Data
- CARRA Legacy Registry Data
- APPLE Data (deidentified, only) and Samples
How to Apply:
- Apply online via the CARRA Data and Sample Request Portal
- Before you start:
- Review the appropriate protocol and CRFs
- If you are applying for CARRA Registry data, download the corresponding data dictionary (Legacy Registry or new/CARRA II Registry), highlight the data fields you are requesting, and include your edited file with your submission
What We Will Need Before We Can Release Data to You
- Approval from the CARRA Data and Sample Share Committee (review will take no more than 4 weeks)
- Your IRB approval or waiver for your specific study/project
- Signed Data and Biospecimen Release forms from CARRA and from Boston Children’s Hospital (both are posted on the CARRA Data and Sample Request Portal)
- For release of limited data sets, an additional data use agreement is required and will be provided to you by BCH.
Help speed up the process!
- Apply early!
- Include your IRB approval or waiver with your submission
- Apply for deidentified data sets whenever possible
Questions? Email [email protected]
The positions below are currently open and seeking candidates. If you or anyone you know is interested in applying, please visit the position description linked below.
Director of Research Operations, CARRA
This position will oversee the portfolio of CARRA research projects and works closely with CARRA and Registry leadership to advance CARRA’s research related programs.
View full online posting
Research Administrator, CARRA
This position will work closely with the CARRA Director of Research Operations to administer CARRA’s grants and research related projects.
View full online posting
The CIS Case Conference Webinar Series, hosted by PID Summer School faculty and graduates and the CIS Early Career Immunologists Committee, is an interactive electronic platform which emphasizes discussion of interesting cases.
You are invited to join them for their next webinar on December 12, 2017, at 8:00pm ET.
Topic: sJIA and Lung Disease
To receive information on how to join the webinar, please contact Morgan Derby at [email protected] or at (414) 224-8095.
Visit the CIS website to view previously recorded webinars: http://www.clinimmsoc.org/education/webinars
Please note, this webinar series does not offer CME credits. The CIS Case Conference webinar series is generously sponsored by LASID and USIDNET.
The Division of Rheumatology at the Hospital for Sick Children will be hosting their inaugural Advances in Childhood Rheumatic Diseases, an International Symposium, which will take place on Sunday, April 29th, 2018 at the Westin Harbour Castle in Toronto.
This year’s theme is very special as we celebrate the retirement of Dr. Earl Silverman, for whom we will dedicate the day and celebration dinner. This full-day symposium will feature both international and local leading experts who will speak on the diagnosis, treatment and current research endeavors relating to rheumatic diseases. The audience will consist of both national and international rheumatologists (adult and pediatric) as well as pediatricians, nephrologists and internists.
If you would like to receive regular symposium updates, please contact Tanya Lorenc at [email protected].
The Arthritis Foundation launched the iPeer2Peer Mentorship Program pilot at the beginning of summer!
So far, the iPeer2Peer program has matched 13 teens with young adult mentors from all over the nation. Recruitment efforts continue, with additional mentor trainings planned in 2018, this program can support many more teens during their transition from childhood to adulthood, learning to live independently, while managing their arthritis and related childhood rheumatic diseases. More details on the iPeer2Peer Program and for patients to apply, please visit and share: www.arthritis.org/ipeer2peer. A special Thank You to The Hospital for Sick Children for their development of iPeer2Peer, partnership with the Arthritis Foundation, and support to launch the first US-based virtual support program for teens with childhood rheumatic diseases.
JINGLE BELL RUN - #JingleBellRun
The Arthritis Foundation’s original Jingle Bell Run is a fun way to get decked out and be festive, while racing to raise funds and awareness to cure arthritis. Put on your favorite holiday costume or tie jingle bells to your shoelaces. ’Tis the season to live it up and be jolly for a reason! Form a team of friends, family and co-workers to run or walk, spread smiles and good cheer... and be a Champion of Yes! Visit www.jbr.org to find an event near you.