CORD Rare Drug Conference: June 8-9, 2022 Registries and Real-World Data INFORM RARE: Beth Potter, Alexandra Wyatt, Pranesh Chakraborty, Monica Lamoureux, John Adams, Kim Angel Opportunities and Challenges for Data Management

1. Treatment Centres & Population
Population density map of Canada using most recent census data (Statistics Canada, 2011) indicating the location of all 16
Hereditary Metabolic Disease Treatment Centres. Centres participating in CIMDRN are indicated in red. Survey data was
collected from January-March 2013.

2. (a) Proportion of IMD centres (n = 13)
reporting staff position at their centre
(b) median number of full-time equivalent staff
for participating IMD centres (n = 13),
indicating minimum and maximum values
Interprofessional care
an integrated approach to health-care delivery in which the
collaboration amongst practitioners of different disciplines or with
different skills and knowledge allows for the delivery of patient health
care by the most appropriate health-care practitioner.

3. Additional services
• Clinical
o Specialized pharmacy
o Dispensary for medical foods/supplements
o Stem cell and solid organ transplant
o Social work
o Complex care teams
o Transition to adult care
o Genetic counselling / Pre-natal genetic diagnostic care
• Laboratory
o Monitoring
o Diagnostic – biochemical, molecular, other
o Sendouts
• Research
o CIMDRN/INFORM-RARE
o Clinical trials
• Patient/family workshops and support groups
• Virtual visits

4. Care maps

5. Provincial systems, National cooperation