MND Trust Registry
MND Trust Registry
We, at the MND Trust set up under Dr. Shyama Narang Foundation, propose to set up an MND Trust Registry through the active participation of various similar non-government organizations in the country and also with the support of the government. The objective of this registry is to set up a multidisciplinary research team in a state-of-the-art diagnostic environment that is completely focused on research and development regarding the causation of MND and its management. The ultimate objective is to find a cure for this disease.
People with MND are requested to take part in this registry and provide information about themselves. All information obtained will be kept confidential and only authorized health care professionals will have access to the information. Any information that is published will not identify you or anyone in the Registry. The information will be used only for research to understand the disease better – its causes and cure. For this purpose, if a person with MND is registered, the research team will identify themselves through approved channels and ask some questions. This could be answered either by the person affected by MND or by their family members.
The questions will generally be about the patient, place of residence, travel history, family history, occupation and place of work, food habits, extra curricular activities, medicines that you have been taking, types of treatment that you are taking, how you are coping with the disease, etc. Our Research team will then put you on to our advisory and medical team who will give you necessary advice in managing the disease.
Frequency of gathering information
Our research team will not keep bothering you with questions after the initial round. However, if there is any additional information that you propose to give, you could speak to the research team or send a mail. Since the disease is progressive in many cases, our research team may get back to you after a year to check on your health. The research team will also be closely working with the neurologists and will update them with the patient information so that medical intervention, if any, will be suggested to you. Our medical doctors can also coordinate with your neurologist to jointly discuss the medical issues and treatment.
By this interaction with our research team, we would say- not only would it benefit you but the MND community at large as it will give them an edge at the investigation into the diseases.