National Cerebral Palsy Hip Surveillance Project
The natural history of hips in cerebral palsy patients is now common knowledge with many natural history studies and surveys based on Hip Surveillance programs started in different countries. Conversely, it is also known that hip surveillance programs can detect hip displacements early, leading to earlier proactive management with better outcomes. It is also known that the incidence of hip problems is as high as 35% and much higher in the non-ambulant, GMFCS level IV and V patients who require close observation.
For these purposes it is desirable to have a National Hip Surveillance Program for Cerebral Palsy. The advantages of such a program include:
- Early detection and management of hip problems in patients with cerebral palsy with better outcomes
- Documentation of such cases for follow up and scientific research
- Creation of awareness of this problem amongst professionals and families
- Form the basis for future legislation
India does not have a hip surveillance program and it is felt that this should be established at the earliest possible time. This will be established under a project to be called the National Cerebral Palsy Hip Surveillance Project.
Steps for establishing a National CP Hip Surveillance Program
- A coming together of important national bodies concerned with management of patients with cerebral palsy. To name a few, these are the Indian Academy of Cerebral Palsy (IACP) fully devoted to cerebral palsy, POSI (Paediatric Orthopaedic Society of India) dealing with a huge burden of the CP pool, IAPMR (Indian Association of Physical Medicine & Rehabilitation), IAP (Indian Association of Physiotherapists), IOTA (Indian Occupational Therapy Association), IAN (Indian Association of Neurology – Association of Child Neurology AOCN) and IAP (Indian Academy of Paediatrics – esp. their chapter of Neurodevelopmental Paediatrics) etc.
- Since the major associations dealing with cerebral palsy are IACP and POSI, they would have 10 members on the National Committee. IACP being a multidisciplinary body has representation from paediatric orthopaedics, physical medicine and rehabilitation, physio and occupational therapy, child neurology and developmental medicine and special education. POSI has representation from Paediatric Orthopaedic Surgeons and these two bodies will hence be the major bodies on the national committee. Other interested associations will be represented by a single member.
- Consensus on the proposed guidelines would be reached and the guidelines published and forwarded to the Government of India for information and necessary action.
- Implementation of the guidelines whilst supervised by this committee, would be the responsibility of the individual organizations viz a viz its members unless the Government of India enforces a uniform policy throughout the country.
- The National CP Hip Surveillance Project may liaise with other bodies besides those noted above for the success of this program. It may partner with governmental agencies and independent foundations or trusts in the future.
For a national project of this magnitude finances are definitely required. Raising finances would be a collective effort of all on the committee and partnerships with various bodies and foundations.
Date of commencement
We hope to reach a speedy consensus between the different associations involved and nomination of their representatives to this committee. IACP and POSI have already agreed to partner and we hope for the cooperation of the other bodies.
The date of commencement of the project would be 1st May 2020.
Dr. Ashok N. Johari
Chairman, IACP Save The Hip Project
Past President, IACP, POSI, IOA, WAIOT, APPOS, APKS, SICOT India