1. PORTAL OVERVIEW
Free Text search
The free text search function works by text-matching data entered into the following fields: cohort name, abstract, principal investigator, funder and institute. This function will return cohorts containing any of the words or phrases entered into the search box. If multiple words are entered, the search will return pages containing all of the words.
The free text search has an inbuilt wildcard (*) option. The result is that variants of words will be returned if the common element is searched for; for example, searching for Alzheimer will return entries containing Alzheimer and Alzheimer’s (and Alzheimers). However, it should be noted that matching is not limited to related or whole words; for example, a search for ALS will return entries containing the word individuals and trials.
2. COHORT CRITERIA
Two broad categories of longitudinal cohorts are included within the JPND database: multi-purpose population cohorts and neurodegenerative disease-specific cohorts.
Population Cohorts – must be over 1,000 participants
Longitudinal population cohorts relevant to neurodegenerative disease (NDD) research can be cohorts that were set up to follow a range of health/other (e.g. social or economic) factors as a population ages over some or all of the participants lifetime. In addition we are including cohorts that were set up primarily to look at other chronic diseases yet include measures of risk that are relevant for the study of NDD e.g. metabolic or cardiovascular factors.
The population cohort category also includes cohorts that track health status from birth or a young age, as JPND considers that these cohorts have potential for future studies of NDD. To be included, such a cohort must:
a) demonstrate an intention to continue until adulthood,
b) include measures of the following factors that are considered to be relevant to NDD progression;
- social deprivation,
- education attainment,
- childhood illness, and
c) have the capability for cognitive measures to be introduced at a future point if not already included.
Neurodegenerative Disease-specific Cohorts
To be included within the JPND portal a neurodegenerative disease-specific cohort must include one of the conditions listed below. Over 200 participants are required unless it relates to a rare neurodegenerative condition.
ND (>200 participants)
- Alzheimer’s disease
- Vascular dementia
- Prion disease
- Parkinson’s disease
- Lewy Body disease
- Mild Cognitive Impairment (MCI)
- Subjective memory complaints (SMC) or subjective cognitive decline (SCD)
- Dementias (unclassified)
Rare ND (<200 participants)
- Spinocerebellar ataxia (SCA)
- Frontotemporal dementia (FTD)
- Huntington’s disease
- Motor neurone disease (MND)
- Spinal muscular atrophy (SMA)
The above distinctions between ND and rare ND can be dependent on the cohort for example although Parkinson’s is not considered rare, if the cohort was specifically focused on juvenile Parkinson’s this would be considered rare and over 200 participants would not be expected. An alternative category, not stated above as it can be utilised by both ND and Rare ND cohorts is ‘Other ND not listed’. If a cohort falls within this category before it is added to the portal it will be assessed for NDD relevance.
3. HOW DO I ADD MY COHORT TO THE PORTAL?
You can add a new cohort by completing the online entry form; please note there are no facilities to save the form part-way through, so must be completed without you leaving the page. A Word version of the cohort form may also be downloaded and submitted via email to firstname.lastname@example.org.
How do I amend my cohort?
To edit a cohort, navigate to the Add or update a cohort section of the Portal and click Submit form via email. Suggested changes should be detailed in the message section of the email form. Alternatively, the Word version of the cohort entry form can be resubmitted, with the changes highlighted in the message section.
4. ADDITIONAL INFORMATION
Cognition is “the mental action or process of acquiring knowledge and understanding through thought, experience, and the senses.” It encompasses processes such as knowledge, attention, memory and working memory, judgment and evaluation, reasoning and “computation”, problem solving and decision making, comprehension and production of language, etc. Cognitive processes use existing knowledge and generate new knowledge. Cognitive measures in the context of this portal include tests such as
MMSE – Mini mental state examination
MOCA – Montreal cognitive assessment
CAMCOG – Cambridge cognition examination
ADAS-Cog – Alzheimer’s disease assessment scale–Cognitive
FCSRT – Free and cued selective reminding test
15WT – 15 Words test
TRAILS – Trail making test
7-min screen – 7 Minute screen
JLO – Judgment of line orientation
HVLT – Hopkins verbal learning
LNS – Letter-number sequencing
SDMT – Symbol modalities test