HSE Clinical Strategy and Programmes Directorate
National Stroke Clinical Care Programme
National Stroke Register
Submission to Add or Amend Data Items on the
National Stroke Register/HIPE Portal
Working in partnership with the ESRI HIPE Unit, the National Stroke Register is a
fundamental element in the development of integrated stroke services being
undertaken by the National Stroke Clinical Care Programme. The Register will
provide essential data to measure the effect of the implementation of the National
Stroke Clinical Care Programme, to assess quality of care provided to stroke and TIA
patients and also to assist in planning of future stroke services and negotiation of
funding. The initial dataset was developed and piloted following a review of datasets
used in other international stroke registers.
In order to make amendments to the Stroke Register dataset, a submission process
has been agreed to standardise submissions for amendments so that they can be
reviewed in a standardised and transparent manner, in line with international
recommendations for development of data items for stroke registers supported by
high-quality evidence. Changes to the Stroke Register may be additions, removals or
amendments to data items. Data amendments will be made once a year and
submissions will be sought from interested parties throughout the year.
The National Stroke Register Steering Group will review all submissions in November
with any amendments going live from the 1st of January of the following year and will
remain in place for a minimum of one year. Membership of the Steering Group is
noted in Appendix I.
The following guidance is provided to assist with making a submission:

Submissions should align with the GRADE Principles (Grading of
Recommendations Assessment Development and Evaluation) for assessing
evidence where practicable (www.gradeworkinggroup.org).

Comparison should be made with recommendations for European stroke
quality standards as provided by the EU-funded European Implementation
Score Collaboration (Wiedmann et al. Variations in Quality Indicators of Acute
Stroke Care in 6 European Countries: The European Implementation Score
(EIS) Collaboration, Stroke 2012; 43:458-463, Table 2) – See also appendix II
of this document.

Definition:
A detailed definition of the proposed data item(s) should be provided along
with the proposed data item answer options if applicable.

Feasibility:
When making a submission it is strongly recommended that careful
consideration should be given to the feasibility of collecting any new data
item(s) across all hospitals. For example, if a submission is made to add a data
item for a standardised scale, consideration needs to be given to how
personnel will be trained in the scale, who will perform the training, the
certification process etc.

Piloting:
As standard procedure, all data items included in the Stroke Register have
undergone a piloting process. For new data item(s), it is recommended that a
proposal is included for piloting the new data item(s) at one or more hospital
sites before consideration for collection nationally.
When making a submission, it is recommended that the relevant Professional Body
has been consulted, is willing to support the submission and verifies that its
members will agree to collect data related to the proposed new data item(s). This
verification should accompany the submission.
Submissions will be accepted on the accompanying form only by Friday the 16th of
November 2012.
Submissions can be made to paul.marsden@hse.ie
Proposed Addition of a Data Item to the National Stroke Register
Please complete under the following headings:
1. Proposed Data Item:
2. Proposed Data Item Definition:
3. Proposed Data Item Answer Options:
4. Rationale for Inclusion:
5. Evidence Base for Inclusion – align with GRADE Principles:
6. Agreement from Professional Body for Inclusion of Proposed Data Item:
Yes
No
Professional Body:
7. Professional Body Verification of Involvement of Members to Collect Data
Relating to Proposed New Data Item:
Yes
No
Supporting Documentation Attached:
Yes
No
8. Describe how this proposed data item(s) aligns with the Wiedmann paper on
Quality Indicators of Acute Stroke Care (See Appendix II):
9. Additional comments supporting proposed addition:
Name:
Position Held:
Contact Telephone:
Contact Email:
Proposed Amendment/Removal of Current Data Item on National Stroke
Register
Please complete under the following headings:
1. Existing Data Item:
2. Proposed Amendment (include any changes to current answer options if
applicable):
3. Rationale for Amendment/Removal:
4. Evidence Base for Amendment/Removal (note: if only a minor change to text of
current data item or current data item answer options, no substantial evidence
required):
5. Has consultation taken place with Professional Body for Amendment/Removal of
data item:
Yes
No
6. General comments regarding data items amendments:
Name:
Position Held:
Contact Telephone:
Contact Email:
For any queries on the submission process please contact:
Email:
paul.marsden@hse.ie
Telephone: 057 9359894
Mobile:
087 6341944
Appendix I
Membership of National Stroke Register Steering Group

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

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Prof. Peter Kelly, Consultant Neurologist, Joint Clinical Lead National Stroke
Programme
Prof. Joe Harbison, Consultant Geriatrician/Stroke Physician, Joint Clinical
Lead National Stroke Programme
Ms. Imelda Noone, Advanced Nurse Practitioner Stroke, Nurse Lead National
Stroke Programme
Dr. Emer Shelly, Public Health Specialist, Department of Public Health, HSE
Ms. Carmel Brennan, Project Specialist Public Health – Programme Manager
National Stroke Programme
Prof. Martin O’Donnell, Consultant Geriatrician, Galway University Hospital
Dr. Rachael Doyle, Consultant Geriatrician, Chairperson Irish Heart
Foundation Council on Stroke
Dr. Frances Horgan, Irish Heart Foundation Council on Stroke
Prof. Miriam Wiley, Head of Health Research and Information Division, ESRI
Mr. Philip Dunne, IT Systems Support, ESRI
Mr. Paul Marsden, Researcher, Department of Public Health, HSE
Appendix II
Quality Standards for Developing and Documenting Quality Indicators to Measure
and Compare Quality of Care in Acute Stroke
Formal Procedure of development and selection of quality indicators including:
-
Standardized review of evidence
-
Establishment of a board for guiding the development process including
representatives from all relevant disciplines treating stroke patients in the
respective country; involvement of patient organisations; quality of care
organisations, and users
-
Formal consensus process
Formal procedure of defining quality indicators including
-
Definition of the term a priori
-
Definition of healthcare to be covered (process, structure, outcome)
-
Definition of domains to be covered
-
Standardised presentation of quality indicators
-
Definition of target values for defined quality indicators
Documentation standards
-
Define time points and domains for follow ups
-
Modular approach (core and extended data set)
-
Address case mix variables such as age, comorbidities, pre-stroke status and
stroke severity when defining outcome measures
-
Quality controls (completeness, validity)
-
Public available reports
-
Regular benchmarking between hospitals
-
Feedback
Update of quality indicators on a regular basis
Verification of implementation by a prospective pilot study
Source: Wiedmann et al. Variations in Quality Indicators of Acute Stroke Care in 6
European Countries: The European Implementation Score (EIS) Collaboration. Stroke
2012;43:458-463