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.44, worst pain NRS 6.13/5.03, PROMIS-PF 39.48/43.85, and EQ-5D VAS 66.54/71.85. This study confirms that diffuse-type TGCT can highly impact quality of life. A prospective observational registry in rare disease is feasible and can be a tool to collect curated-population reflective data in orphan diseases. Name of registry Tenosynovial Giant Cell Tumors (TGCT) Observational Platform Project (TOPP). NCT02948088. Date of registration 10 October 2016. URL of Trial registry record https//clinicaltrials.gov/ct2/show/NCT02948088?term=NCT0294
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