Progress of the Rick Hansen Spinal Cord Injury Registry
By Garry Angus
Just two years after the formalization of the team and the project, the
Rick Hansen Spinal Cord Injury Registry is in its pilot phase at
Vancouver General Hospital and G.F. Strong, and at Foothills Hospital in
Calgary, Alberta. Remarkable speed for a remarkable project.
"So far the momentum has been wonderful, and the commitment of the team,
the steering committee and everybody, all the stakeholders across the
country has been quite something," says Monique Echols, Project
The development of registry -- a unique database project capable of
international scope - is, as the Project Director says, a "fundamental
piece" in the Rick Hansen Man in Motion Foundation's Spinal Cord Injury
Network strategy: "developing a Canada-wide network of clinicians and
scientists collaborating to improve functional recovery and quality of
life" for people living with spinal cord injuries (SCI)."
"The sort of overall mission of the registry," says Echols, "is to
collect extensive wide data nationally at this point for the purpose of
improving SCI care and clinical outcomes."
Echols is quick to point out that a unique feature of registry is that
it is "first and foremost, consumer orientated."
"We want to make sure that the needs and issues of the consumers are
heard so research is focused appropriately, not just on the clinical,"
she says. "We are interested in their [people with spinal cord injuries]
quality of life, and what kinds of things clinically and in the
community they need."
What the Registry Project team set out to do was to create and develop
effective national SCI data retrieval and management system, which could
be used as a clinical and epidemiological based information service for
provincial, national, and international data exchange and collaboration
between scientists and clinicians to help partners achieve their SCI
Echols, who joined on as Project Director in 2002, relates that the
"whole process" began three years ago where the Rick Hansen Man in
Motion Foundation in partnership with various sites across the country
and key stakeholders in clinical research and industry started talking
about the concept and "a small internal team started to look at
exploring the possibility of developing this nationally."
"Before my time there was a lot of work done as preamble to get
stakeholder buy-in and involvement. And then roughly about two years
ago, I came on board, where they had finally developed their mission
statement and some preliminary strategic direction. Then we built the
team to start the [Registry] project," Echols said.
Initiated under the leadership of Dr. Marcel Dvorak, the RH SCI Registry
Project consists of three key teams. Responsible for overall
accountability is the Project Steering Committee with representatives
from the Rick Hansen Man In Motion Foundation (RHMIMF), International
Collaboration on Repair Discoveries (ICORD), Ontario Neurotrauma
Foundation (ONF), Vancouver Coastal Health Authority (VCHA) and other
Expert clinical input is provided by a Project Advisory Committee made
up of representatives from various stakeholders with an interest in the
development and use of the registry. The third component is the Project
Team under the leadership of Echols.
"We have developed the infrastructure for a program ... it's not just a
database," says Echols. "We have a central staff; we have the ability to
support technically and in terms of processes and operational stuff at
participating sites. So we have nursing, medical, physiotherapy, health
records and information system staff on board at a central level and we
have a physical location with physical security. The infrastructure is
An important feature of the project team is the inclusion of a
"designated and trained privacy officer" who, according to Echols, "is
responsible for ensuring that all consent issues, the privacy and
security and data quality are as they should be" -- a significant
consideration for the people providing information to registry and for
the project's national and international scope.
"One of the most unique things about registry is that we have direct
patient contact," Echols says. "We are not pulling information just from
their clinical records. And that is different and requires a lot more
attention and detail to the consent process and the privacy and security
issues around that."
The registry project abides by all provincial and federal legislation
with respect to privacy and security. Data sharing agreements are in
place with participating local and provincial health authorities. Echols
points out, "We are stewards of the data. We do not own the data. The
only person that owns the data is the individual themselves."
Client interviews and the generated "data sets" that organize
information about their SCI experience are the building blocks of the
According to Echols, the project recognizes the importance of
information, "and is capable of being used in a 'phase-staggered
process,' where participating sites collect 'core' data sets, and have
the option of collecting 'expanded' sets."
Core data sets consist of: basic client demographics; injury mechanisms
and descriptive data; treatment parameters; complications; morbidity and
mortality data; and standardized outcome assessment. Echols says the
optional expanded data sets include a variety of research modules. For
example, she said, "there's pain, bowel and bladder, sexual health, more
detailed clinical information, so (researchers and clinicians) can
She notes, "The scope of the database is such that we collect, at the
acute care level, the rehabilitation level, and we follow and track the
individual through the course of their life at various intervals, so our
consent process incorporates all of that."
The registry pilot -- which began collecting data at Vancouver General
Hospital and GF Strong Rehabilitation Hospital on June 29, 2004, and
will start at Foothills Hospital in Calgary in January 2005--is making
good use of the "phase-staggered" process.
"I've done a number of registries before and they take time and buy-in,
and initially they can be a little cumbersome and expensive.... so what
we did is design the system in a flexible manner," says Echols. "For
example in our B.C. pilot in Vancouver with V.G.H. and G.F. Strong (in
addition to core data set collection), we are doing the expanded (data
sets) and in Calgary Foothills Hospital, they are starting with the core
under the guise that eventually once the processes are really well
established and people are comfortable, then you can move on into the
She says "the individuals have options for their level of participation"
with the Registry and the data sets.
"If a person wanted to withdraw, we would be aware that they are an SCI
individual, but we would not have their data. It would be removed from
the system. If an individual was expanded and just wanted to go to the
core, we can accommodate that. If an individual wanted to stop after the
rehabilitation phase or stop at the acute phase and didn't want to be
involved at the community follow-up level, that can be accommodated as
well, because the core focuses mostly on the acute phase. It identifies
there has been an injury and there is an individual out there. Aligned
with privacy and security, of course, goes the whole premise that
patient-identifying information is not available.
"During their SCI acute phase," says Echols, "in Vancouver, a clinical
nurse specialist and /or trained research nurses will approach patients
and leave them with some materials and explain to them what we are about
and how it works, and then come back at time that is convenient for the
"And there is an interview process that takes place and we check off on
this questionnaire a lot of the information for the core and the
expanded. And of course, there are also significant pieces that are
pulled from the charts, but because everything has been standardized at
an international level, all our questions are based on accepted
standardized and used questionnaires. So it's not open-ended stuff for
interpretation. Everything has been graded and accepted as a benchmark."
The registry pilot has to date collected approximately 60 cases in
record at the acute care level and is now starting to import at the
rehabilitation level, according to Echols.
"We have yet to start tracking at the community level because
individuals are not there yet. The first encounter is at one year
following discharge, and then one year, two years, five years, and on."
Echols explains that BC, Alberta and Ontario are targeted for national
roll-out in 2006 and that the registry Team is working in partnership
with the Ontario Neurotrauma Foundation to pilot select sites in
Echols says the pilot process will take about one year to complete.
"Then we will be prepared to roll-out nationally. The pilot process
involves us learning how to implement this system properly and to find
out where the bugs are and the problems so we are actively modifying and
changing and adapting the system and our program as the pilot
progresses. We are almost ready for version two."
With approximately 40,000 people in Canada living with SCI – a
relatively small incidence compared to other studied conditions such as
cancer - the registry team designed the database and data collection
procedures "thinking," as Echols says, "eventually it is going to have
to be international. The registry is standardized and completely aligned
with international standards, so that in the bigger picture it will fit
"One of our team members sits on the international committee and keeps
them updated regularly and we also have ongoing communication contact to
make sure everything is aligned, so we are right on board there," she
Echols says that future planning will examine how to capture
retrospective data for patients long past their injuries.
"Interestingly enough," she says, "we have four requests so far, via our
from SCI individuals who are interested in participating. So it's really
Echols notes that collecting retrospective data will be a slow process.
"We will be working with the Rick Hansen Man in Motion Foundation, who
are our key champions, and their connections to also identify
individuals," She says. "So far the momentum has been wonderful."