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To understand the experiences, challanges and how parents deal with their children having MPS disease.

A Phenomenological study to explore the lived in experiences, challenges and coping strategies faced by parents of children wiith Mucoploysaccharidiosis(MPS). - NIL

Status
Active, not recruiting
Phases
Unknown
Study type
Observational
Source
CTRI
Registry ID
CTRI/2024/06/068279
Enrollment
30
Registered
2024-06-04
Start date
Unknown
Completion date
Unknown
Last updated
2024-06-24

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

Conditions

None listed

Interventions

Control Intervention1: Nil: Nil

Sponsors

Neha Jakhar
Lead Sponsor

Eligibility

Inclusion criteria

Inclusion criteria: Either Mother or Father of children age between 2 to 14 yrs diagnosed with Mucopolysaccharidosis stage I II IV VI VII IX Those who are able to communicate through english or hindi

Exclusion criteria

Exclusion criteria: Not able to participate those with type III disease

Design outcomes

Primary

MeasureTime frame
1 To understand and interpret parents experience of living and caring for a children with MPS. 2 To explore the challenges faced by parents of children with MPS. Timepoint: During study—

Secondary

MeasureTime frame
Coping strategies faced by parentsTimepoint: During study—

Countries

India

Contacts

Public ContactDr Yumnam Surbala Devi

All India Institute of medical sciences New Delhi

surshaikhom@gmail.com9953559853

Outcome results

None listed

Source: CTRI (via WHO ICTRP) · Data processed: Feb 4, 2026