Health Condition 1: G710- Muscular dystrophy
Conditions
Interventions
Intervention1: Patient-Centered Care model: The duration of therapy or intervention is of 6 months. The patient centered care model will be a Comprehensive DMD -Tele Care Model
Components of Care mod
Sponsors
Dr Amarjeet Singh
Eligibility
Inclusion criteria
Inclusion criteria: (1) Families with affected boys with clinical symptoms suggestive of DMD and increased creatine kinase (CK) levels (CK >1500IU) (2) Boys between 5-15 years of age. (3) Laboratory confirmation: o Genetic confirmation by Multiplex Ligation-Dependent Probe Amplification (MLPA)/ Polymerase Chain Reaction (PCR)/ Next-Generation Sequencing (NGS)/SANGER or o Muscle biopsy (showing absence of dystrophin expression genetically). (4) Caregiver having smart phone or internet facility.
Exclusion criteria
Exclusion criteria: 1. Subjects/families who are unwilling to participate or unable to comply with the protocol study procedures or visits 2. Consent or assent not given.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| 1.Change in quality of life 2. Change in Out of Pocket expenditure incurredTimepoint: 6 months, 1year | — |
Secondary
| Measure | Time frame |
|---|---|
| 1. Socio-economic determinants of the disease.Timepoint: Single (at the time of recruitment);2. Feasibility of tele follow-upTimepoint: 1year;3. Neuro-muscular quality of life in pediatric age group.Timepoint: three data points: 1. Recruitment 2.End of Phase-1 (6month) 3.End of Phase-2 (1 year);4. Pattern of health care utilization for different stage of diseaseTimepoint: Single (at the time of recruitment) | — |
Countries
India
Contacts
Public ContactDr Titiksha Sirari
Postgraduate Institute of Medical Education and Research
Outcome results
None listed