Active — Not RecruitingNot Applicable

Quality of Life and Disease-related Symptoms in Individuals With Systemic Mastocytosis

Sweden400 participantsStarted 2024-03-25

Plain-language summary

Systemic Mastocytosis is a rare and complex disease caused by accumulation of mast cells. The skin, bones, gastrointestinal tract, bone marrow and liver are the organs most often affected. Symptoms can vary greatly between patients. The study aims to describe the Swedish cohort's self-rated quality of life and levels of disease-related symptoms.

Who can participate

Age range18 Years

SexALL

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AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

Inclusion Criteria: * Swedish-speaking individuals aged 18 years or older and diagnosed with indolent systemic mastocytosis (ISM) or advanced systemic mastocytosis (AdvSM), verified by a bone marrow biopsy Exclusion Criteria: * An assessment by the treating physician that the individual has a cognitive impairment making participation impossible * The patient has undergone an allogeneic stem cell transplant

What they're measuring

EORTC QLQ C-30

Timeframe: Day 1

The Mastocytosis Quality of Life Questionnaire (MC-QoL)

Timeframe: Day 1

The Hospital Anxiety and Depression Scale (HADS)

Timeframe: Day 1

The Gastrointestinal Symptom Rating Scale (GSRS)

Timeframe: Day 1

The Visceral Sensitivity Index (VSI)

Timeframe: Day 1

The Brief Pain Inventory - Short form (BPI-SF)

Timeframe: day 1

The Brunnsviken Brief Quality of life scale (BBQ)

Timeframe: Day 1

Self Care of Chronic Illness Inventory

Timeframe: Day 1

Trial details

NCT IDNCT06065007

SponsorUppsala University

Sponsor typeOTHER

Study typeOBSERVATIONAL

Primary completion2024-09-30

View on ClinicalTrials.gov More Mastocytosis, Systemic trials