2009 Progress in Comprehensive Care for Rare Blood Disorders Conference -- Presented by CSL Behring

The focus of the conference held at the Delta Toronto Airport West hotel between November 13-15, 2009 was on patient registries and comprehensive care for rare blood disorders while reinforcing and building partnerships.

Researchers, clinicians, allied healthcare providers, hospital administrators, Ministry of Health officials, policy makers, members of industry and leaders from patient organizations.

The interactive program consisted of keynote speakers, plenary sessions, panel discussions, question-and-answer sessions and informative displays.

THURSDAY, NOVEMBER 12

7:30 pm - 9:00 pm: a WELCOME DESK was open for early registrations.

FRIDAY, NOVEMBER 13

8:00 am - 8:45 am: Continental breakfast and registration.

8:45 am - 9:00 am: Welcome remarks
Michel Long, Conference co-president: Welcome
Tina Morgan, Conference co-president: Conference objectives
Introduction and conference objectives presentation
Dr. Bruce Ritchie, Friday Session co-chair: Objectives of the day
Objectives of the day presentation

PATIENT REGISTRIES:

9:00 am - 9h45 am: Primer on health informatics
    Electronic health records; electronic medical records; registries; anonymization
    SPEAKER:

•     Dr. Gavin Tong, Canada's Health Informatics Association (COACH); Director
  Gordon Point Informatics Ltd.
  Dr. Gavin Tong's presentation
  

9:45 am - 10:30 am: What is a registry?
    Research / clinical trials
    Tracking outcomes / medical records
    Tracking surveillance
    Tracking product use
    Patient organization membership list
    Registry standards
    SPEAKER:

•     Ms. Magda Melo, Research Manager, St-Michael's Hospital, Toronto
  Ms. Magda Melo's presentation

10:30 am - 10:45 am: Refreshment break

10h45 am - 14h50 pm: Examples of current registries
    Why have one? The functions / benefits / risks of registries, links to comprehensive care  / kinds of data / limitations & benefits of international registries / adverse event registries / funding opportunities / ownership

•     10:45 am - 11:15 am: Dr. Christopher Bredeson, Center for International Blood and Marrow Transplant Research, Milwaukee, USA. The International / European Bone Marrow Transplant Registry.
  Dr. Bredeson's presentation

•      11:15 am - 11:30 am: Ms. Jennifer Philippe, CBS OneMatch Stem Cell & Marrow Network, Ottawa. The OneMatch Bone Marrow Registry.
  Ms. Jennifer Philippe's presentation
•       11:30 am - 12:20 pm: Dr. Gerhard Kindle of the Centre of Chronic Immunodeficiency, Freiburg, Germany. The European Society for Immunodeficiencies Database (ESID).
  Dr. Kindle's presentation
•       12:20 pm - 12:45 pm: Mr. Michael Bombara from Alexion Pharmaceuticals. The Alexion Worldwide PNH Registry.
  Please note that Mr. Bombara's presentation is not available for public viewing; please refer to the conference proceedings for information about this presentation.

12:45 pm - 1:30 pm: Lunch   

•     1:30 pm - 1:45 pm: Dr. Anthony Chan, Vice President of the Association of the Hemophilia Clinic Directors of Canada (AHCDC). The Canadian Hemophilia Registry (CHR).
  Dr. Chan's presentation
•    1:45 pm - 1:55 pm: Dr. Bruce Ritchie, Chair of Canadian Hemophilia Assessment and Resource Management System (CHARMS). Hemophilia registries and medical record keeping.
  Dr. Ritchie's presentation
•     1:55 pm - 2:10 pm: Dr. Maha Othman, Assistant Professor and Researcher at Queen's University. The Platelet type von Willebrand Disease (PT-VWD) Patient Registry.
  Dr. Othman's presentation
•     2:15 pm - 2:50 pm: Ms. Heather Sutcliffe, Director of Marketed Health Products Safety and Effectiveness Information Bureau at Health Canada. Canada Vigilance and MedEffect. (Via teleconference).
  Ms. Heather Sutcliffe's presentation
  

        
2:50 pm - 3:30 pm: Challenges of establishing registries: barries and roadblocks

•    Mr. Michael Power, Barrister & Solicitor. Privacy, security, ownership and governance issues as they relate to establishing registries.
  Mr. Power's presentation

3:30 pm - 3:45 pm: Refreshment break

3:45 pm - 4:15 pm: How to encourage the establishment of patient registries

Invited panelists shared their thoughts on the subject: Ms. Melo; Dr. Bredeson; Dr. Bruce Ritchie; Dr. Kindle; Dr. Chan; Ms. Janina Kon; Mr. Power; Dr. Othman.

4:15 pm - 4:45 pm: Audience discussion with panelists

The audience had the opportunity to ask questions and have a discussion with the panelists. Session was facilitated by Silvia Marchesin.

4:45 pm - 5:00 pm: Day wrap-up by session co-chairs Silvia Marchesin and Dr. Bruce Ritchie.


SATURDAY, NOVEMBER 14

8:00 am - 8:45 am:  Continental breakfast and late registration.

PROGRESS IN COMPREHENSIVE CARE

8:45 am - 9:00 am: Review of recommendations from 2006 NRBDO Conference.
    Presented by Silvia Marchesin, Past President of AAMAC.
Ms. Marchesin's presentation

9:00 am - 2:00 pm: Progress and lessons learned in Canada
    - Recent examples include: home administration of therapeutics, clinics for rare blood disorders, standards of care and accreditation, treatment guidelines, hemovigilance surveillance networks, transition from pediatric to adult care, national collaborations
    
    

• 9:00 am - 9:20 am: Dr. Nancy Dower of the Edmonton Comprehensive Centre for Bleeding Disorders (Stollery Children's Hospital). The creation of comprehensive care services for PID and HAE in northern Alberta, her Comprehensive Care Clinic, its home therapy program and the successes in providing care to HAE, PID, and porphyria patients.
  Dr. Dower's presentation
•  9:20 am - 9:40 am: Dr. Jacques Hébert of the Centre de recherche appliqué en allergie de Québec. The Quebec PID-HAE clinics.
  Dr. Hébert's presentation
  
• 9:40 am - 9:50 am: Harriet Lyons, a HAE patient. Progress in care for HAE patients from the perspective of a patient.
  9:50 am - 10:10 am: Dr. Robert Schellenberg of St-Paul's Hospital in Vancouver. The BC adult clinics in PID and the sub-cu home treatment program.
  Dr. Schellenberg's presentation
• 10:10 am - 10:30 am: Dr. Christine McCusker of Montreal's Children Hospital. Pediatric comprehensive care in PID and sub-cu home treatment.
  Dr. McCusker's presentation

10:30 am - 10:45 am: Refreshment break

•  10:45 am - 11:05 am: Dr. Bruce Mazer of Montreal's Children Hospital. Canadian Society of Allergy and Clinical Immunology (CSACI) PID treatment guidelines for treatment and diagnosis.
  Dr. Mazer's presentation
• 11:05 am - 11:15 am: Michael Whelan. A patient's perspective about sub-cu treatment and how progress in this area has impacted patients.
• 11:15 am - 11:50 am: Dr. Rena Buckstein, Co-Director of the MDS Research Program at Toronto's Odette Cancer Centre. Guidelines for MDS and the MDS Centres of Excellence.
  Dr. Buckstein's presentation
• 11:50 am - 12:10 pm: Dr. Yigal Dror, Director of the Marrow Failure and Myelodysplasia Program at Toronto's Hospital for Sick Children. A comprehensive childhood bone marrow failure and myelodysplasia program.
  Dr. Dror's presentation

12:10 pm - 1:00 pm: Lunch  

• 1:00 pm - 1:20 pm:  Mr. David Page, Executive Director of the Canadian Hemophilia Society. Standards for hemophilia and other inherited bleeding disorders.
  Mr. Page's presentation
• 1:20 pm - 1:40 pm: Dr. Robert Klaassen of the Children Hospital of Eastern Ontario (CHEO). Transition from pediatric to adult care.
  Dr. Klaasen's presentation
•  1:40 pm - 2:00 pm: Dr. Isaac Odame of Toronto's Hospital for Sick Kids. Thalassemia treatment guidelines.
  Dr. Odame's presentation   

 
2:00 pm - 3:00 pm: Models for comprehensive care
    

• 2:00 pm - 2:40 pm: Keynote speaker, Dr. Edmund Jessop from the U.K. National Commissioning Group. Experiences of NCG on developing, sustaining and ensuring accessibility to comprehensive care programs for rare conditions and the National Institute for Clinical Excellence (N.I.C.E.).
  Dr. Jessop's presentation

• 2:40 pm - 3:00 pm:  Mr. David Page of the Canadian Hemophilia Society. The U.K. hemophilia accreditation process in the U.K. and Ireland.
  Mr. Page's presentation
  

3:00 pm - 3:15 pm: Refreshment break

3:15 pm - 4:45 pm: Advocacy workshop: 'TOOLS FOR ACTION'

This workshop introduced various types and principles of advocacy including six key steps of an action plan with a view to affect change from an organizational perspective. Case studies were used.

The workshop was facilitated by Ron Rosenes of the Canadian Treatment Action Council (CTAC).
Mr. Rosenes' presentation

4:45 pm - 5:00 pm: Day wrap-up facilitated by David Page.

Special dinner for speakers and sponsors: 7:30 pm


SUNDAY, NOVEMBER 15

8:00 am - 8:30 am:  Continental breakfast.

8:30 am - 9:30 am: WORKSHOP: What can we do within our respective roles?

Workshop on national collaboration among health care professionals, industry and patient organizations and the role of patient organizations.

Session was facilitated by David Page and Tom Alloway of the Canadian Hemophilia Society.
Mr. Page's and Mr. Alloway's presentation

9:30 am - 10:00 am: WORKSHOP: Barriers, challenges, shortcomings, areas to improve

This workshop served to identify principle barriers based on previous discussions during the conference and to add any new ones to the list which were ranked by priority in the next session.

Session was facilitated by Tina Morgan.

10:00 am - 10:15 am: WORKSHOP: priority areas needing action

The objective of this session was to identify 3 to 4 top priority areas from the list generated in the previous session and which will be addressed in the short term with a concrete action plan. Action planning was be done in the next session.

This session was facilitated by Winnie Leung.
Click here to see the various barriers identified and the 4 priority areas proposed to be worked on in the near future.

10:15 am - 10:30 am: Refreshment break

10:30 am - 12:15 pm: WORKSHOP: Strategies and action planning to address priority areas

The objective of this session was to identify concrete strategies and actions to address the challenges and to allow for further progress to be made in the four proposed priority areas. Participants worked in sub-groups and then shared the results in a plenary session.

This session was be facilitated by Michel Long and Tina Morgan, co-presidents of the conference.

The results of this session can be found in the proceedings of the conference. The four recommended areas needing work will be submitted to the member organizations of the NRBDO for consideration and possible inclusion in their 2010 action plan.

12:15 pm - 12:30 pm: CONCLUSION AND NEXT STEPS

This was a wrap up for the Sunday session and the entire conference by the conference co-presidents.

12:30 pm - 13:30 pm: LUNCH AND DEPARTURE

For information regarding the conference, please contact Mr. Michel Long at: 1-800-668-2686 or nrbdo@hemophilia.ca