EOPD.ie Research Project – Questions Required Before Approval

EOPD.ie Research Project – Questions Required Before Approval

Please complete the questions below using the wording and order from the attached PDF as closely as possible.
Before EOPD.ie agrees to participate in, support, promote or recruit participants for a research project, we require answers to the following questions and supporting documentation where applicable.
About the Research
What is the full title of the research project?
What university, hospital, college, research body or other organisation is responsible for the research?
Who is the Principal Investigator/Lead Researcher?
Who is the researcher's supervisor, where this is a student research project?
What is the main research question?
What are the aims and objectives of the research?
Why is this research relevant to people living with Parkinson's disease and, specifically, Early Onset Parkinson's?
What benefit could the research provide to people living with Parkinson's or the wider Parkinson's community?

Approximately how much staff, volunteer, Board or PPI time will be required from EOPD.ie?
What is EOPD.ie expected to commit to, and for how long?
Are there any financial commitments or costs for EOPD.ie?

Other
Is funding available to cover EOPD.ie staff time, PPI participation, expenses or other costs associated with our involvement?

Has the research received formal Research Ethics Committee approval?
Which institution and Research Ethics Committee approved it?
What is the ethics approval/reference number?
On what date was approval granted?
Can you provide EOPD.ie with a copy of the ethics approval?
Does the ethics approval specifically cover the recruitment methods, questionnaires, surveys and participant information being presented to EOPD.ie?
If ethics approval is not required, can you provide written confirmation from your institution explaining why?

Who are you looking to recruit?
How many participants are required?
What are the inclusion and exclusion criteria?
Are participants required to have a confirmed diagnosis of Parkinson's?
Are you specifically seeking people with Early Onset Parkinson's?
Does the research involve anyone under 18 or another potentially vulnerable participant group?
How will participants be recruited?
What exactly will a participant be required to do?
How much time will participation take?
Are there any known risks, disadvantages or potential distress associated with participation?
Are participants being paid or reimbursed for their time or expenses?
Are participants being paid or reimbursed for their time or expenses?

How will informed consent be obtained?
Can participants withdraw after agreeing to participate?
If they withdraw, what happens to information already collected about them?
Can you provide the Participant Information Sheet and Consent Form for EOPD.ie to If they withdraw, what happens to information already collected about them review?

Who is the Data Controller for this research?
Is EOPD.ie expected to be a Data Controller, Joint Controller or Data Processor at any stage?
Is EOPD.ie expected to be a Data Controller, Joint Controller or Data Processor at any stage?
What personal information will be collected?
Will health information or other special-category personal data be collected?
What is the lawful basis for processing the personal data and special-category data?
Where will the research data be stored?
Will any data be stored or processed outside Ireland or the European Economic Area (EEA)?
Who will have access to the data?
Will data be shared with any other university, organisation, company, researcher or third party?
Will participants' information be anonymous, anonymised, pseudonymised or identifiable?
How long will the information be retained?
Why has that retention period been selected?
What happens to the information at the end of the retention period?

Who owns the data collected through this research?
Who controls how the research data can subsequently be used?
Can the information be used for research other than the project participants originally agreed to?
Can the information be placed in a research database, repository, registry or biobank?
Can the information be shared with other researchers in the future?
Could the information be provided to or accessed by commercial or pharmaceutical companies?
Could the research contribute to the development of a commercial product, treatment, service, technology or intellectual property?
If commercial value or intellectual property results from the project, what rights, if any, will EOPD.ie or the participating community have?

How will the results be used?
Do you intend to publish the research in an academic journal?
Could the results be presented at conferences, included in reports, used in future research or otherwise made publicly available?
How will you ensure individual participants cannot be identified in publications
Will participants receive a summary of the final results?
Will EOPD.ie receive a plain-English summary of the results?
Will EOPD.ie be informed about publications, reports or presentations resulting from research involving our members?
Will the contribution of EOPD.ie and our community be appropriately acknowledged?

Do you intend to name EOPD.ie as a partner, supporter or collaborating organisation?
Where will the EOPD.ie name or logo appear?
Will EOPD.ie have an opportunity to approve the use of its name and logo before publication?
Does EOPD.ie have any responsibility or liability arising from being identified as a research partner or supporter?

When does the research start?

DayMonthYear
2 digit day, 2 digit month, 4 digit yearDate
When does recruitment start?

DayMonthYear
2 digit day, 2 digit month, 4 digit yearDate
When does recruitment finish?

DayMonthYear
2 digit day, 2 digit month, 4 digit yearDate
When will participant involvement finish?

DayMonthYear
2 digit day, 2 digit month, 4 digit yearDate
When is the overall research project expected to finish?

DayMonthYear
2 digit day, 2 digit month, 4 digit yearDate
When are the results expected to be available?

DayMonthYear
2 digit day, 2 digit month, 4 digit yearDate

Please provide the following, where applicable:

Rows	Is Doc details provided	N/A
Research proposal/summary
Ethics approval
Participant Information Sheet
Participant Consent Form
GDPR/Data Protection information
Privacy Notice
Questionnaire or survey
Interview/focus-group questions
Recruitment advertisement/material
PPI plan
Data Management Plan
Research timeline
Funding information
Details of the Principal Investigator and institution
Details of the person responsible for data protection queries

Following receipt of the above information, EOPD.ie should record its decision as

Rows	Approved	Approved subject to conditions	Declined	Further information required
Following receipt of the above information, EOPD.ie should record its decision as

Further information required detail
Important: EOPD.ie agreeing to advertise or circulate a research opportunity does not mean that EOPD.ie endorses the research or accepts responsibility for the research. Participation by EOPD.ie members must remain entirely voluntary.

About the Research