From August to mid-September 2011 JPND conducted an online consultation based on discussion points and suggestions for progress identified through a series of expert workshops and meetings held earlier in the year.
The survey addressed the following areas:
- Education, training and collaboration
- Health and social care issues
- Prevention/treatment strategies and trials
- Disease cause, mechanisms and models
- Diagnosis, disease definitions and outcome measures
- Data, registries, repositories and centres
- Policy, regulation and legislation
- Funding and funding mechanisms
Respondents were asked to indicate their level of support for a series of statements and suggestions for progressing neurodegenerative disease research (ND) in Europe, to identify priorities within the above areas, and to provide further input on specific points. Respondents were also asked about implementation of these strategies and to provide details on any considerations that may have been overlooked.
Key stakeholders such as healthcare professionals, those directly affected by ND including patients and their carers, academic and commercial researchers, charity organisations and patient groups, funding agencies, regulators and policy-makers were targeted for their input; however, the survey was publicly accessible allowing any interested party to respond.
In total 356 responses were received from organisations or individuals from 24 different countries and 2 European-wide organisations.
Directory of responses
When completing the survey, respondents were asked to indicate which stakeholder category they most identified with, if they were completing the survey on behalf of an organisation, and if their response could be published (attributed or anonymously).
PDFs of published responses can be accessed via the links below. Responses are organised by stakeholder category; the number in parentheses refers to the number of responses in each category/file.
- Academic researchers i – attributed (135)
- Academic researchers ii – anonymous (52)
- Charities and patient groups (14)
- Commercial researchers (12)
- Funding agencies, policy-makers and regulators (5)
- Healthcare professionals (29)
- Patients with a neurodegenerative condition or their carers (55)
- General public or other (4)
Note that respondents are in most cases allocated to the stakeholder category in which they were received.
You are able to view a blank PDF copy of the full survey here.