2009 Progress in Comprehensive Care Conference 

​presented by CSL Behring

Event overview
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.


Conference objectives
  • Establish the foundations for the creation and implementation of national patient registries which will contribute to the understanding of rare blood disorders, help quantify how many people are affected, provide prevalence estimates, define demographics, measure treatment outcomes and facilitate research;
  • Raise awareness about the need for comprehensive care for rare blood disorders;
  • Share experiences, best practices and identify areas needing improvement;
  • Review progress that has been made since the 2006 conference and identify the achievements;
  • Evaluate what works and doesn’t work in Canadian and International models;
  • Advocate and push initiatives forward.

Target audience & event format
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.

FINAL PROGRAMME & GUEST SPEAKER PRESENTATIONS
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:
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:
10:30 am - 10:45 am: Refreshment break 


10:45 am - 2:50 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 break3:15 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

CONFERENCE PROCEEDINGS
Conference proceedings 

2006 Comprehensive Care Conference

Comprehensive care conference a resounding success!

Participants at the Comprehensive Care for Rare Blood Disorders conference, held February 3-5, 2006 in Toronto, pronounced it a resounding success.

One hundred and fifty people attended including physicians, allied health professionals and representatives of patient organizations, provincial governments, blood system operators and the pharmaceutical industry.

Written comments included: “An impressive meeting,” “Very interesting and important,” “An informative and inspiring weekend.” Another participant wrote: “Having patients, physicians, scientists, governments and pharmaceutical companies attending at the same time is the way to make progress in patient care; pooling rare disorders together is a further major help.”

At the conclusion of the meeting, participants came to a consensus on the components of comprehensive care in the context of rare blood disorders, and passed other motions on the need for patient registries and the continued work of the Network. (See “Motions”)

Please click here for the complete proceedings of the conference.


Motions adopted at conclusion of Comprehensive Care for Rare Blood Disorders conference
Toronto, February 3-5, 2006

A conference on comprehensive care for rare blood disorders, organized by the Network of Rare Blood Disorder Organizations and supported by a grant from the Public Health Agency of Canada, was held in Toronto, February 3-5, 2006. One hundred and fifty people attended including physicians, allied health professionals and representatives of patient organizations, provincial governments, blood system operators and the pharmaceutical industry.

At the conclusion of the meeting the following motions were debated and voted on.

Motion 1
The Network of Rare Blood Disorder Organizations, collectively, and its member organizations, individually, will advocate with provincial/territorial governments for comprehensive care for rare blood disorders. The Network recommends that the following components, in principle, be considered essential to comprehensive care:

  • Provincial designation
  • National patient registries
  • Self/family administration of therapeutics
  • Patient, family and association involvement in care
  • Education of patients, families and health care providers
  • Standards of care and portability
  • Decentralization through outreach
  • Multi-disciplinary care
  • Defined core services delivered by a comprehensive care team
  • Programme evaluation and accreditation
  • National collaboration among health care professionals and patient organizations
  • Post-marketing surveillance including blood-borne pathogen surveillance
  • Collaborative research
  • Flexibility in organization

Adopted unanimously by all participants


Motion 2
The Network of Rare Blood Disorder Organizations recommends that:

Health Canada/PHAC, CIHR, Provincial and Territorial Health Ministries continue to support the work of the Network of Rare Blood Disorder Organizations.

Adopted unanimously by all participants


Motion 3
The Network of Rare Blood Disorder Organizations recommends that:

The Public Health Agency of Canada establish a national working group to coordinate and support the development of national data base registries, including quality of life measures, for the rare blood disorder disease groups including, but not limited to: 

  • Primary immune deficiency
  • Hereditary angioedema
  • Rare blood disorders
  • Hemoglobinopathies
  • Bone marrow disorders
  • Porphyria
  • Hemophilia/bleeding disorders

... and that Dr. Tom Bowen be mandated to represent the Network of Rare Blood Disorder Organizations for this initiative.

Adopted unanimously by all participants


Network of Rare Blood Disorder Organizations (NRBDO)/Réseau des Associations Vouées aux Troubles Sanguins Rares (RAVTSR)
​is incorporated under the Canada Not-For-Profit Organizations Act