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CLICK NOW for agenda and registration for the ENACT symposium at Sick Kids | Learn about translating innovative research tests into clinical care (June 12th)

Register now at www.eventbrite.com/e/symposium-next-generation-research-testing-tickets-60057100404

This multidisciplinary meeting will highlight emerging challenges and opportunities in test development through transnational research, and will bring together experts to address current limitations of provincial regulations for novel testing.

Date:
June 12th, 2019
Time:10:00 am – 4:00 pm
Place:SickKids, PGCRL Auditorium, 686 Bay St, Toronto
Agenda:

10:00 – 10:20am Welcome and Introduction
Dr. Ronald Cohn, MD, FACMG, Incoming CEO, SickKids; Dr. Michael Salter, MD, PhD, FRSC, Chief of Research, SickKids; Dr. Meredith Irwin, MD, Co-Chair ENACT Committee, Associate Chair (Research) Paediatrics, SickKids; Dr. Rulan Parekh, MD, MS, FRCP(C), FASN, Co-Chair ENACT Committee, Associate Chief of Clinical Research, SickKids

10:20 – 11:20am Keynote Address
Dr. Jeffrey Botkin, MD, MPH, Chair of National Academies of Sciences, Engineering & Medicine Committee that authored “Returning Individual Research Results to Participants” will discuss the reaction to the report, as well as other issues and challenges that have arisen in this area.

11:20 – 11:30am Coffee Break

11:30 – 12:10pm Test Development and Implementation
Dr. Wendy Ungar PhD, Chair of Ontario Genetic Advisory Committee, Health Quality Ontario; Dr. Susan Richardson, MD, FRCP(C), Senior Associate Scientist Emeritus, Research Institute, SickKids, Adjunct Scientist, Public Health Laboratories, Public Health Ontario

12:10 – 12:30pm The Next Frontier: Whole Genome Testing
Dr. Christian Marshall, PhD, Director, Molecular Genetics, SickKids

12:30 – 1:15pm Lunch

1:15 – 1:45pm Cancer Gene Panel Development
Dr. Adam Shlien, PhD, Associate Director of Translational Genetics, SickKids

1:45 – 3:30pm Testing Innovation Panel Discussions
Moderators: Dr. Gabrielle Boulianne, PhD, Associate Chief, Science Strategy & Innovation, SickKids; Dr. George Yousef, MD, PhD, Chief, Paediatric Laboratory Medicine, SickKids
Panellists: TBD

3:30pm Concluding Remarks and Next Steps
Dr. Meredith Irwin, MD, Associate Chair (Research) Paediatrics, SickKids; Dr. Rulan Parekh, MD, MS, FRCP(C), FASN, Associate Chief of Clinical Research, SickKids

SickKids leadership assembled the ENACT (ENAbling Clinical Translation) committee to examine and address issues related to the development and use of novel tests to guide clinical diagnosis, prevention or treatment. Comprised of clinicians, clinician scientists, basic researchers, legal experts and bioethicists, the ENACT committee is working to create guidelines and policies for tests not currently covered by regulations; make recommendations around the development, use and validation of novel tests and return of results; and develop processes to provide access to innovative research tests and ultimately translate clinically validated tests into care.

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Pat McCarthy’s report from the 8th International Meeting on Indigenous Child Health–Jon’s Tricky Journey

Jon’s Tricky Journey was funded by a C17 Council Education Research Grant

I had the good fortune to be able to attend and present a poster abstract at the 8th International Meeting on Indigenous Child Health, held in Calgary, Alberta, March 22-24, 2019. This was an amazing experience with pediatrician’s, nurses and child and youth advocates from many countries attending. The conference was organized by both the Canadian and American Pediatric Societies in collaboration with numerous First Nations, Metis and Inuit associations. This conference is held every two years, and I would encourage anyone to attend.

The plenary, oral, and poster presentations were all very thought provoking and challenged participants to think more about the health disparities and systemic barriers that exist for aboriginal peoples around the world. At the same time conference participants were inspired to think about how they could, as individuals, pick up the challenge and make a commitment to become allies in relationships with aboriginal peoples, to change and improve the health outcomes for indigenous children.

My poster presentation about my book Jon’s Tricky Journey was very well received, and I was especially touched when a young pediatric oncologist from Seattle came to see me and kept thanking me for producing this book. I gave her a big hug and a copy of my book, and she told me she could not wait to give it to a young Inuit patient from Alaska she was working with. Alaska has a large Inuit population called the Yupik.

Jon’s tricky journey is a bilingual publication, written in both English and Inuktitut. Accompanied by a resource guide for parents and caregivers, including hospital and support information, Jon’s Tricky Journey opens a conversation between Inuit children facing a cancer diagnosis and their families to help make a difficult and confusing time more manageable.

My book is available to order through Fitzhenry & Whiteside customer service at 1-800-387-9776, and at bookinfoatfitzhenry.ca

It is also available for order on Amazon in both Canada and the USA, and at Chapters/Indigo stores.
https://www.amazon.ca/Jons-Tricky-Journey-English-Inuktitut/dp/1772271454/ref=sr_1_fkmrnull_1?keywords=jon%27s+tricky+journey&qid=1554213991&s=gateway&sr=8-1-fkmrnull

Attend the ENACT symposium at Sick Kids on June 12th to learn about translating innovative research tests into clinical care

Sign up to be notified when registration opens.

This multidisciplinary meeting will highlight emerging challenges and opportunities in test development through transnational research, and will bring together experts to address current limitations of provincial regulations for novel testing.

Keynote:Dr. Jeffrey Botkin
Chair of National Academies of Sciences,
Engineering & Medicine Committee that
Authored Returning Individual Research Results to Patients
Date:
June 12th, 2019
Time:10:00 am – 4:00 pm
Place:SickKids, PGCRL Auditorium
686 Bay St, Toronto

SickKids leadership assembled the ENACT (ENAbling Clinical Translation) committee to examine and address issues related to the development and use of novel tests to guide clinical diagnosis, prevention or treatment. Comprised of clinicians, clinician scientists, basic researchers, legal experts and bioethicists, the ENACT committee is working to create guidelines and policies for tests not currently covered by regulations; make recommendations around the development, use and validation of novel tests and return of results; and develop processes to provide access to innovative research tests and ultimately translate clinically validated tests into care.

WEBINAR: Synoptic Pathology Reporting for Pediatric Patients with Hepatoblastoma

Please confirm your participation in this free webinar by April 1st, and register online, by visiting http://www.pogo.ca/education/synoptic-reporting/

On April 3, 2019, POGO is pleased to present an important professional development educational event in partnership with the Canadian Association of Pathologists (CAP-ACP) and the Canadian Partnership Against Cancer (CPAC).

The webinar “Synoptic Pathology Reporting for Pediatric Patients with Hepatoblastoma” will provide expert advice for advancing pediatric oncology through optimal pathology investigation, moving toward standardized reporting, and incremental clarity of clinical implications.

Date: Wednesday, April 3, 2019
Time: 1:00 – 2:30 p.m. (60 minutes presentation; 30 minutes Q & A)

Speaker: Dr. Dina El Demellawy, MD, PhD, FRCPC
Pediatric and Perinatal Pathologist, Children’s Hospital of Eastern Ontario (CHEO) Associate Professor, Department of Pathology and Laboratory Medicine Faculty of Medicine, University of Ottawa

Audience: Pathologists, Pathology Fellows and Residents;
Pediatric Oncologists, Surgeons, Radiation Oncologists; Clinical Research Associates (CRAs).

Learning Objectives:

  1. To review the CAP protocols related to Hepatoblastoma and its use by pathologists specializing in pediatric oncology.
  2. To understand changes in the latest revision of the CAP cancer protocols and electronic cancer checklists.

Participation details: Please confirm your participation in this free webinar by April 1st, by visiting http://www.pogo.ca/education/synoptic-reporting/ to register online.

For questions about registration, please contact Clara Jordan at cjordan@pogo.cacjordan@pogo.ca or 416-592-1232 ext. 237. Webinar login details will be provided in advance of the event.

Recording of LLSC WEBCAST now available – Children & Teens with Cancer: Challenges at School after Treatment


Speaker: Ann Klinck, M.A.Sc., C. Psych. Assoc., School Liaison, Pediatric Cancer School Support Program, Children’s Hospital, London Health Sciences Centre, Ontario

This training is useful for those who support children and teens during and after the cancer experience including parents, relatives, teachers, school support staff and nurses. The recording of this webcast can found on our Website at: www.llscanada.org/events/children-teens-with-cancer-challenges-at-school-after-treatment?src1=22346&src2=

Questions? Contact Fred Ho at The Leukemia & Lymphoma Society of Canada | fred.ho@lls.org | http://www.llscanada.org

Register for the N2 AGM by Jan 22.

REMINDER: Please register online no later than Tuesday January 22, 2019.

One of the benefits of membership in N2, either through C17 or your local institutional or provincial membership, is that you can attend the annual meeting of members. This meeting has an educational and information focus, providing updates and presentations on current issues impacting clinical trials in Canada, as well as updates from the various N2 committees.

You are cordially invited to attend the 12th Annual N2 Meeting to be held at Vantage Venues (previously the St. Andrew’s Club and Conference Centre) http://www.vantagevenues.com in downtown Toronto on February 5-6, 2019. (Please note this is a Tuesday and Wednesday).

The full agenda can be found HERE.

As a member of N2, you are encouraged to attend this important meeting and network with your colleagues. The N2 Annual Meeting is also open to additional members of your clinical research organization. If they wish to accompany you to the meeting, they are welcome to attend.

To view information about the event and register, please follow this link: https://n2canada.ca/n2-annual-meeting/

Attendees requiring travel assistance must contact Karen Arts karen.arts@n2canada.ca for pre-approval. Assistance of a maximum of $750 is available for one member per organization, outside the greater Toronto area for the cost of travel to and from Toronto. The funds may be used for flight and/or rail costs only.

For anyone in your clinical research organization wishing to attend, please ensure they register by completing the on-line registration here: https://secure.e-RegisterNow.com/cgi-bin/mkpayment.cgi?state=2772

Due to increasing economic pressures, the N2 Board of Directors has approved a registration fee of $50.00 (+HST) per person. This fee of $50 plus HST is payable by credit card only. This fee is to offset some charges incurred on catering, venue rental and AV equipment required to hold the two-day annual meeting. To ensure accurate catering estimates it is imperative we know the total number of attendees ahead of time by having everyone register. Please register online no later than Tuesday January 22, 2019.

We hope to see you at the meeting.

Shelley

New Investigator Cancer Trials Practicum 2019 – 2020 [applications due 11-Feb-2019]

The Canadian Cancer Trials Group (CCTG) is very excited to announce that the the 2019-2020 New Investigator Cancer Trials Practicum applications are open. This is a unique opportunity for new investigators to access hands on training and practical work in the field of cancer clinical trials. The purpose of the CCTG New-Investigator Cancer Trials Practicum is to deliver a training program that includes practical trial experience at cancer sites across the country over a one-year period. This opportunity is the first of its kind in Canada enabling the best and brightest new oncology researchers to acquire training and experience.
New Investigator Cancer Trials Practicum 2019 - 2020

Application deadline is February 11, 2019

To find out more: New Investigator Cancer Trials Practicum

N2 fall newsletter includes updates to French CITI courses, info on the N2 SOP tool, and how to access ACRP Ethics and Human Subjects Protection course free of charge

Excerpts from the newsletter are below–read the whole newsletter at https://mailchi.mp/6669b546f52d/read-the-fall-n2-newsletter

Updates to CITI Courses!

The French GCP Refresher course is now available to N2 members. It has been translated into French from the current CITI Canada E6 (R2) compliant GCP Refresher course. Shelley is working with institutional administrators to add the course to N2 member sites. Please allow 5-10 business days for the requests to be processed.

ACRP Ethics and Human Subjects Protection courses available at no charge!

After registering select Pricing Without Contacts Hours at the following link:

www.acrpnet.org/courses/ethics-human-subject-protection/

  • Note: there is currently not the ability to generate a completion certificate, instead participants are instructed to take a screenshot of the transcripts area that indicates they have taken the course
  • Sometime in November, ACRP will launch the Refresher course (about 45 minutes in length) to this topic.
  • If there are any questions, David Burnham can be reached at david.burnham@acrpnet.org

Standard Operating Procedure (SOP)

  • The SOP committee is reviewing V7 N2 SOPs to prepare for V8, scheduled to be distributed in April 2019.
  • This committee is encouraging new members to join. Please contact N2 if you are interested.
  • N2 CAREB/ACCER REB SOP committee will reconvene this Fall, working on V.3 to be released in 2019.

N2’s Featured Tool: Standard Operating Procedures (SOPs)

  • Maintenance of one set of investigative site SOPs (version 7) for all Canadian trial sites (community & academic), accepted by Health Canada
  • All “regular” clinical trials, Natural Health products, Medical Devices, Equipment Calibration, Investigator Initiated Research
  • BiospecimenManagement related SOPs via OICR
  • REB SOPs created with CAREB
How to Use This Tool?  Please log onto your N2 Box account from the login page from n2canada.ca. If you have any trouble accessing your account please contact Shelley King at shelley.king@n2canada.ca. Please contact N2 if you need any further help with using SOPs.

Quality Committee Update

There are three tools the committee are working to complete:

  • Quality Management System policy and procedure
  • Study Risk Assessment Tool is a two-level resource
  • Risk-Based Monitoring Plan

The committee has collaborated with Health Canada to collate and analyze feedback received regarding the final draft of the Part C, Division 5 regulations guidance document GUI-0100.

Education & Training Committee Update

There are two courses that are in the process of being reviewed and finalized:

  • RCR Mega Course which is a combination of Life Sciences, Physical Sciences and Social Humanities- Expected release date: end of 2018)
  • Clinical Research Coordinator Course (CRC) – Expected release: early 2019

French GCP Refresher released early this month. The French GCP Basic course is currently being translated and is expected to be released next year.

Webinar: Pain Community Research Priorities with Dr. Christine Chambers, 03-Oct-2018

This is your opportunity to contribute to the CIHR Institute of Musculoskeletal Health and Arthritis (IMHA) priorities for 2019-2022! Please join one of a series of Webinars being hosted by the Scientific Director of IMHA, Professor Karim Khan, and leaders of the IMHA research community. Here are the details for the webinar that will focus on priorities for Pain Research.

Pain Community Research Priorities with Dr. Christine Chambers
Wednesday, October 03, 2018 at NOON Eastern Time
Mark the time in your calendar!

*Click here to enter the webinar on the day*

 

Agenda for the session:

12:00 PM – 12:05 PM Introduction to the webinar – Tanya Gallant, IMHA Assistant Director
12:05 PM – 12:15 PM IMHA priority setting process. Why are we having webinars and what can you do to influence IMHA priorities? – Prof. Karim Khan, IMHA Scientific Director
12:15 PM – 12:30 PM Pain Research. What are the current priorities? What needs to be included? Dr. Christine Chambers
12:30 PM – 12:50 PM Open Forum – opportunity for those on the webinar to contribute via the webinar service and Twitter.
12:50 PM – 12:59 PM Close of the webinar and next steps

If you can’t make it live, we will make the recording available afterwards transcribed into English and French. Use this email address – imha-iala@cihr-irsc.gc.ca – to send in your contributions until Friday, October 19, 2018.

For more on IMHA and its 2014-2018 priorities, see this link: http://www.cihr-irsc.gc.ca/e/27024.html

Webinars will be scheduled for each of our priority and research areas. If you’d like to be notified about our other webinars, please subscribe to our newsletter by emailing imha-iala@cihr-irsc.gc.ca.

Sincerely,

Christine T. Chambers, PhD RPsych
Institute Advisory Board (IAB) Member, CIHR IMHA

CONSIDER CIRCULATING: Ewings Cancer Foundation of Canada (ECFC) has produced a documentary for wide distribution to educate non-oncology physicians, coaches, teachers and others on the importance of early detection of Ewing sarcoma and the impact of misdiagnosis.

*Approx 47 minutes. May not be suitable for young viewers.

Ewing sarcoma is difficult to identify and often gets misdiagnosed allowing the cancer to proliferate beyond treatable stages.  If you read the personal stories on the ECFC website, there is recurring theme of misdiagnosis (e.g., sport or dance injury). Early detection is critical to avoiding metastasis, which is associated with a drop from 50-70% survival rate to an unacceptable 10-15% survival rate.

ECFC has produced this 47 minute documentary for wide distribution to help educate on realities of Ewing sarcoma.   Find below a letter of introduction from ECFC.


Dear Doctors,

What do you know about Ewing sarcoma? Most know very little and, shockingly, this can also be true about health professionals. It is a nondiscriminatory, aggressive cancer that primarily attacks the bones and soft tissue in younger people but can affect anyone at any age. Characteristically one of the most painful forms of cancer, tragically Ewing sarcoma is difficult to identify and often gets misdiagnosed allowing the cancer to proliferate beyond treatable stages. Currently, Ewing sarcoma is being treated successfully in 50-70% of cases identified using dated chemo regimes that are more than 35 years old. As you know, once it starts to spread, survival rates plummet to just 10-15%. We know old chemo regimes are damaging young, growing bodies and endangering the survivors with their lifelong health complications. This, in turn, becomes a burden on an already stretched healthcare system. There is no measure on the physical, emotional and financial tole of their families.

 

 

The Ewings Cancer Foundation of Canada (ECFC) is a registered charity who has spent the last 10 years fighting tirelessly to raise awareness and ultimately for the eradication of Ewing sarcoma (ES) through fundraising efforts sponsoring critical research and development initiatives in Canada. The ECFC was formed by Tina Pernica and her husband Bernie in 2008 after the death of their 19 year old son, Reid. Tina and Reid spent many hours combing the internet, in vain, for information on ES to make sense of what was happening to him before he passed away. To their surprise, there was very little out there and more surprising was the lack of knowledge amongst the healthcare community. This was unacceptable to them and Reid vowed that should he survive, he would make a difference in Canada, increasing awareness and research in Ewing sarcoma. After his death, his parents carried on his pledge and today the ECFC has funded 4 critical research grants through a partnership with C17 Council, the Children’s Cancer and Blood Disorders group in Alberta, with a 5th coming soon

 

 

Over the past 10 years, the ECFC have learned from patients this cancer is most often overlooked as it mimics growing pains, sports injuries or an inflammatory condition, delaying diagnosis with devastating consequences. We knew we had to do something about increasing awareness within the medical community. In 2017, the Ewings Cancer Foundation of Canada produced Make It Stop, the first and only professional feature length documentary (47 minutes) about Ewing sarcoma in the world to date. Shot and produced in Canada, it is the very first educational tool created for front line health care practitioners who may or may not be familiar with ES, including chiropractors, sports and massage therapists, radiology and the rheumatology communities to name a few. Featured in this film are Drs. Adam Shlien, David Malkin and Abha Gupta at SickKids, Toronto; Dr. Jason Berman in Dalhousie University, Halifax; and Dr. Poul Sorensen at the BC Cancer Care Centre, Vancouver.

 

Please view this film here: https://www.youtube.com/watch?v=WYavC9GZpeg. We invite your comments and feedback once you do! We know that knowledge is power and with that power we can help stop this devastating cancer from taking the health and lives from society’s most vulnerable, the young. We ask you to include this documentary in your newsletters, industry publications, medical workshops, conferences, lectures, and/or symposiums and educational events for all registered rheumatologists across Canada.
Early detection is vital and can make the difference between life and death.

 

 

It is our hope we can work together to increase awareness for Ewing sarcoma especially within the Rheumatology Sector.

 

 

With sincere appreciation,

 

 

 

Tina Pernica
President & Founder
Ewings Cancer Foundation of Canada
Charitable Registration # 83833 0025 RR0001

O: 905-737-0127