Here's why we should be on the RP Registry. Information about the Indian Retinitis Pigmentosa Registry
Retinitis pigmentosa (RP) is a term given to a group of hereditary retinal diseases that are caused by a multiplicity of genetic defects leading to a slowly progressive retinal damage. Night blindness, progressive visual field defects, and visual impairment are common symptoms of the disease. RP and allied diseases usually strike early in life, leaving otherwise healthy individuals significantly vision impaired or blind for life. The current worldwide prevalence of RP is considered to be about 1:4000, while recent studies in India have indicated that prevalence in India is possibly 10 times higher than in the western world. There is presently no cure for this disease, although progress in fields of stem cells, gene therapy, cell transplant and artificial visual prosthetics including a retinal implant appears promising. Some of these clinical trials are currently on-going elsewhere in the world, and are likely to come to India soon. Registry or a database is a collection of patient information, usually kept at a central repository. This information can be either collected from the patients themselves, or is requested from physicians, other healthcare providers or hospitals/clinics/nursing homes, or any other medical facility. The web-based Indian RP Registry will help evaluate epidemiological factors related to RP, thus highlighting and drawing attention to the enormity of the problem in India as well as its social and economic consequences. The data collection and analysis will help policy planners and advocacy groups to set priorities and allocate resources judiciously. The registry will also keep patients informed about various treatments for RP, and allow patients a chance to interact with other patients. With the information available, referring physicians would be able to better manage their RP patients, while maintaining continuity of the patient-physician relationship. This patient database will allow access to authorized people, with highest security measures in place to prevent unwelcome intrusion. Patient confidentiality will be strictly respected. The main objectives of the registry are: Obtain current and future prevalence of RP at the national and regional level in India Conduct epidemiological & clinical research studies Dissemination of information about new treatment/s to patients, and act as important resource for conduct of clinical trials Disseminate information for planning & early detection programs Respond to national and local concerns about the disease Provide information to citizens, legislators, and health professionals To obtain a better correlation of the clinical course of RP to specific genetic variations Collect clinical data and the impact of RP on Quality of Life (QOL) Better understanding of the relationship between clinical parameters such as visual acuity and visual field loss & impact on the person’s daily activities Policy planners require solid estimates of disease prevalence to determine the likely benefit of these and future therapies If you are a RP patient, or have a family member, or know someone who does, please forward this information to that person. Please ask the person/s to answer the questions that are given below in an email, or at least to inform at the email retinain...@gmail.com, so that we can either try to call you to get the information, or try to send you a hard copy of the form for you to fill and send back. Please do not forget to give us the contact phone number and the address of the person. Patient Information Sheet Name Date of Birth (Date/Month/Year) Sex: Male / Female Address City & State Phone no: (Landline) and (Mobile) Email Does any living family member have a similar condition? If yes, how are you related? Did anyone else in the earlier generations of the family suffer from a similar problem? If yes, please describe. Does any family member have any other eye problems (Cataract, Glaucoma, etc? Have you undergone any eye surgery, or any surgery for this problem? If yes, give details? Do you have any other disease (Blood pressure, Diabetes etc.)? For how long? Have you suffered from any trauma to any of the eyes? If yes, give details. Have you taken any treatment for your eyes in the past? If yes, give details. Are you on any treatment for your eyes at present? If yes, give details. Do you or did you have night blindness? If yes, since when? When did you first notice visual field problems? Since when did you notice decreased vision? Which eye was affected first? What is your current vision: in the right eye and the left eye separately? If there is total visual loss, when did you loose your vision? Which eye has or had better vision? Who is your current eye specialist? Give medical record number if available. Have you seen any other ophthalmologist in the past? Give medical record number if available. Have you been investigated in the past? What tests were performed? When was it done? ___ Fundus fluorescein angiography or FA (last test on ________________) ___ Electroretinogram or ERG (last test on ________________) ___ Visual evoked potential or VEP (last test on ________________) ___ Optical Coherence Tomography or OCT (last test on ________________) ___ Visual Fields (last test on ________________) Would you like to be contacted if any RP study or studies are planned? YES / NO Would you like to be contacted for consideration of any new treatment that will be available to Indian patients in the future? YES / NO Signed & dated: Name: Note: If you are a RP patient, or have a family member, or know someone who does, please forward this information to that person. Please ask the person/s to answer the questions that are given above in an email, or at least to inform us at the email retinain...@gmail.com, so that we can either try to call you to get the information, or try to send you a hard copy of the form for you to fill and send back. 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