How does the PAB work?

The PAB has been actively involved in several RADAR-AD activities from the beginning of the project. The members of the PAB provide input about relevant issues for the project. This input is collected in different ways. Members of the PAB receive feedback about the impact of their input.

Work of the PAB to date

All PAB members have participated in face-to-face consultations with researchers addressing the following topics/issues:

  1. Understandings and prioritisation of functioning in early Alzheimer’s dementia.
  2. Helping the RADAR-AD Device Selection Team to understand relevant benefits and barriers of existing devices and preferences that should be taken into consideration when selecting the devices.
  3. Feedback to the protocol of the RADAR-AD planned clinical trial.
  4. Ethical issues to be considered in the context of RADAR-AD.
  5. Ethical issues of particular relevance for the Ethical Committee.

Members of the core group have provided:

  1. Feedback about the questions to be asked in the RADAR-AD focus groups.
  2. Feedback on the participant information sheet and consent form for the clinical trial (main study).
  3. Feedback on the study partner information sheet and consent form for the clinical trial (main study).
  4. Input to the researchers about issues that could help them make decisions regarding device selection.
  5. Input about vulnerability and stigma in the context of RADAR-AD research.
  6. Individual interviews with members of the core PAB in relation to ethical issues in RADAR-AD.
  7. Input about recruitment and retention in the trials.
  8. Feedback about changes to the research protocol linked to the COVID-19 pandemic.
  9. Feedback on the participation information sheet for the clinical trial (sub study).
  10. Feedback on consent form for the clinical trial (sub study).

Due to the COVID-19 pandemic, the RADAR-AD PAB has been operating online since 2020. Several online meetings took place in 2020 and 2021. The PAB will continue working remotely until it is possible and safe to resume face-to-face meetings.

Activities of the PAB in 2021

 

Date

Activity

February- March

Consultation about visits to participants in their own homes during the pandemic

 

4 March

Informative meeting

11 March

Consultation about Tier 2 and Tier 3 of the study

25 June

Update on main study and presentation of the preliminary findings

May

Review of a plain summary for the general public of a RADAR-AD published article

June

Feedback on the Participants’ Manual for Tier 2 of the study

11 November

Consultation on the recruitment of participants with dementia and the end of the studies for participants.

December

Video clip for recruitment

 

 

Participation of PAB members at events

30-31 March

Participation of PAB members in the RADAR-AD online General Assembly

 

5 October

RADAR Public Involvement internal webinar.

 

7 October

IMI event on impact

 

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