Facioscapulohumeral Muscular Dystrophy (FSHD) Core Dataset
The TREAT-NMD Core Dataset for FSHD supports patient registries to collect robust longitudinal data which capture natural history and inform standards of care.
Please read the notes before viewing the dataset:
- The dataset is for all registries collecting data on individuals with FSHD (clinician/patient/dual reported).
- A mandatory data item in the core dataset means that registries must include it in their data collection forms and be able to store and provide the data; even if the data is not always available for all individuals.
- Personal identifying information on patients will never be requested nor accepted as part of a data submission to TREAT-NMD.
- This is a minimum core dataset; registries may collect additional items of local interest or relevance.
- TREAT-NMD is an inclusive network. If registries are not able to implement any mandatory items, they are encouraged to identify support needs, and/or a plan to work towards their inclusion, and discuss with us.
We welcome feedback on the FSHD Core Dataset. Feedback on specific items or groups of items can be submitted to the FSHD Taskforce by emailing firstname.lastname@example.org.
Please note version 2 of the dataset was released on 10-11-2021 to incorporate suggestions from the 2016 ENMC workshop report. Version 1 (May 2011) has now been superseded, but it can be viewed here for information only.
This work is under the governance of the TGDOC Chairs:
Chair: Anna Ambrosini (Fondazione Telethon, Milan, Italy)
Chair-Elect: Michela Guglieri (Newcastle University and Newcastle Hospitals NHS Foundation Trust, United Kingdom)
Outgoing Chair: Craig Campbell (Children’s Hospital, London Health Sciences Centre and Western University, Canada)