Maybe add clinical assessment tools

[anngvu]

There are some clinical assessment / phenotyping instruments that might be useful for researchers who are more focused on patient symptom and behavioral research, such as:

1. cNF-Skindex.

• Summary: The new cNF-Skindex is an instrument to assess cNF-related QoL validated with NF1 patients recruited in the ComPaRe online cohort.
• Ref: https://pubmed.ncbi.nlm.nih.gov/35412677/

2. INF1-QOL questionnaire.

• Summary: A validated disease-specific questionnaire to measure quality of life (QOL) in NF1 that is suitable both as an assessment tool in clinical practice and in clinical trials of novel therapy.
• Ref: https://pubmed.ncbi.nlm.nih.gov/28193237/

3. AlgometRx nocimeter, if validated for NF (which is the aim of this project)

• Summary: Tool for more objective measurement of pain

Overall, this is not going to be a category with a huge number of instances, and it might be outside the original funded scope of the database (?), but if there's an opportunity for extension this could be a good consideration.