The meaning of living with myotonic dystrophy for couples

The meaning of living with myotonic dystrophy for couples - Living with myotonic dystrophy

Status

Active, not recruiting

Phases

Unknown

Study type

Observational

Source

NL-OMON

Registry ID

NL-OMON33153

Enrollment

Registered

2009-05-12

Start date

2009-05-13

Completion date

Unknown

Last updated

2024-05-06

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

muscular disease myotonic dystrophy

Interventions

None listed

Eligibility

Age

18 Years to 99 Years

Inclusion criteria

Inclusion criteria: - Couples living together for at least 5 years of which one of them has myotonic dystrophy type I and the partner is healthy - Myotonic dystrophy has much impact on daily life of both - the couple is able to and happy to share their experiences in two interviews - both person with myotonic dystrophy and partner have given informed consent

Exclusion criteria

Exclusion criteria: - couples living together for less than 5 years - couples hardly experiencing problems in activities and participation - One of the partners does not want to participate

Design outcomes

Primary

Measure	Time frame
the stories and experiences of persons with myotonic dystrophy and their partners	—

Secondary

Measure	Time frame
nvt	—

Countries

Netherlands

Outcome results