Patient Registration Section 1: SMA Patient Information: 1.Name of Patient * 2. Date of Birth* 3. SexMaleFemale* 4. SMA TypeType1Type2Type3Type4* 5. Do you have Genetic Test Report YesNoIf You Wish to get Genetic test done, contact CureSMAIndia - info@curesmaindia.org | +91 78785 51885 * 6. Please upload the Genetic Test Report Done(Use Cropper to set image and use mouse scroller for zoom image.)Done(Use Cropper to set image and use mouse scroller for zoom image.)Drop file here or click to select.7. SMA confirmed by (Genetic test)SMN 1 deletionMuscle biopsyClinically by DoctorAny other please specify8. No. of SMN 2 copies0 copy1 copy2 copies3 copies4 copies5 or more copiesDo Not KnowDo You Wish to Know SMN 2 Copies number ? Then Contact - info@curesmaindia.org | +91 78785 51885 9. Contact No Fathers Number Mothers Number * SMA Patients self Contact Number Guardians Contact Number 10. Current Address 11. City/town/village of Residence 12. State of Residence 13. Permanent address (mention only if it is different than above current address) * Pin Code Section 2: SMA Patient's Present Condition To be updated every six months: In following section, please update present condition of your SMA child/patient * 14. Ambulatory/non-ambulatory (Walking abilities)Can walk independentlyCan walk with orthotic supportCan stand independentlyCan stand with orthotic supportCan sit independentlyCan sit with support (spinal brace)Can sit with support (any other support)Cannot sit at allNot applicable ( Child is below one year age. ) * 15. What is the weight of SMA patient?* 16. Breathing condition: Is SMA Patient able to breathe comfortably?YesNo* Non-invasive ventilation (BiPAP) dependencyYesNo* 17. Invasive ventilation (Tracheostomy) dependencyYesNo a) When was the Tracheostomy surgery done ? b) In which Hospital? c) Contact details of Doctor/Surgeon-Email/Phone Number ? d) Contact details of Doctor/Surgeon-Email/Phone Number ?* 18. Feeding tube (G-tube/NG-tube) dependencyYesNo When was the G-Tube/NG Tube surgery done ? In which Hospital? By which Doctor/surgeon? Contact details of Doctor/Surgeon-Email/Phone Number ?* 19. Spine condition (Scoliosis of spine) - Has spine/scoliosis surgery been done?YesNoNot Applicable a) In which year? b) By which Doctor/spine Surgeon? c) In Which Hospital ?d) In case of scoliosis/bent spine, does the SMA Patient use spinal brace?YesNo Please Mention in brief about what type of spinal brace & name & contact of othotic/bracing specialist who made the brace.Do You Need help Support ? Contact - info@curesmaindia.org | +91 78785 51885 e) Do you know SMA Patient’s Scoliosis cobb angle?YesNo f) Do You Need Help ? g) Please Mention Cobb angle h) Name and Contact details of Spine Doctor who helped you to measure Cobb angel - 20. Other deformities if Any21. Current SMA Management * a) Is your child undergoing regular physiotherapy session?YesNo Please Mention Name & Contact of Your Physiotherapist .Do You Need help Support ? Contact - info@curesmaindia.org | +91 78785 51885 * b) Are You Following SMA Specific diet plan for your child ?YesNo Please Mention Briefly about diet plan & Name & Contact of your Nutritionist .Do You Need help Support ? Contact - info@curesmaindia.org | +91 78785 51885 * 22. Does SMA Patient use Wheelchair?YesNoa) WheelchairPediatric manualPediatric motorizedManualMotorizedDo You Need help Support ? Contact - info@curesmaindia.org | +91 78785 51885 * 23. Name Your Regular Doctor * 24. Name Your Regular Hospital 25. SMA Patients regular monitoring parameters To be updated every six months: * Date On Which below information is updated.* a) Chop Intend Score (Type of Muscle charting)YesNoNot applicableDont Know Mention Chop Intend scoreDo You Need help Support ? Contact - info@curesmaindia.org | +91 78785 51885 * Hammersmith Scale Score (Type of Muscle charting)YesNoNot applicableDont know Mention Hammersmith scoreDo You Need help Support ? Contact - info@curesmaindia.org | +91 78785 51885 * Assessment of motor performance of upper limbs - RULM ScoreYesNoNot applicableDont Know If yes, mention RULM scoreDo You Need help Support ? Contact - info@curesmaindia.org | +91 78785 51885 * Lung function OR Pulmonary Function test score YesNoNot applicableDont Know Mention % of lung functionDo You Need help Support ? Contact - info@curesmaindia.org | +91 78785 51885 * Cobb Angle in case of scoliosis (Bending of spine)YesNoNot applicableDont Know Mention degree of cobb angleDo You Need help Support ? Contact - info@curesmaindia.org | +91 78785 51885 * 26. Has your SMA child received any SMA medicine till now?YesNoA(0) Spinraza through SIPHAP programYesNo A(i) Name of Doctor & Hospital A(ii) Are you seeing any improvement in your child? Even small improvements are countedVery minor improvementSatisfactory improvementSubstantial improvementNo ImprovementA(iii) Are you continuing with Physiotherapy post medicine access?YesNoA(iv) Are you continuing with proper Nutritious Diet post medicine access?YesNoB(0) ZolgenSMA through MAP programYesNo B(i) ZolgenSMA through GMAP OR Crowdfunding .B(ii) Are you seeing any improvement in your child? Even small improvements are countedVery minor improvementSatisfactory improvementSubstantial improvementNo ImprovementB(iii) Are you continuing with Physiotherapy post medicine access?YesNoB(iv) Are you continuing with proper Nutritious Diet post medicine access?YesNoC(0) Risdiplam through CUP,YesNo C(i) Name of Doctor & HospitalC(ii) Are you seeing any improvement in your child? Even Small improvements are countedVery minor improvementSatisfactory improvementSubstantial improvementC(iii) Are you continuing with Physiotherapy post medicine access?YesNoC(iv) Are you continuing with proper Nutritious Diet post medicine access?YesNo Section 3: SMA Patient Occupation Information 27. Patient Education/OccupationNot enrolled in school as child cannot sitNot enrolled as child is too small/not eligible to go to schoolNot enrolled due to society/family issuesStudying in special schoolStudying in government (regular) schoolStudying in private (regular) schoolStudying in College/UniversityTaking Home SchoolingWorking (government job)Working (private job)Working (outside India)Self employed/Own BusinessWorking with NGOWorking for social causeJoined family Businessa) Does SMA Patient have Health Insurance ?YesNoCentral Government Health Scheme (CGHS)Autonomous Institute covered under Central Government Health Scheme (CGHS)Public Sector Undertaking covered by Central or state Govt OR own PSU reimbursement schemeDefense Services covered by Central or state Govt OR own Defense Service reimbursement schemeRailways Services covered by Central or state Govt OR own Railway services reimbursement schemeState Government Health Insurance (SGHI)Employees State Insurance Corporation (ESIC)Private Health insuranceNone of the above Name of Private Health Insurance. Do You Need HelpDo You Need help Support ? Contact - info@curesmaindia.org | +91 78785 51885 * 28. Hobbies of SMA Patient? To be updated every year. Section 4: Parents/Guardian’s back ground Information 29. Name of Father/Guardian 30. Father Education?31. Father OccupationState Government ServiceCentral Government ServicePublic Sector UndertakingDefense ServiceRailways ServicePrivate ServiceBusinessConsultant/Self employedFull time CaregiverPart time work and part time CaregiverRetired from Central Government ServiceRetired from State Government ServiceRetired from Private ServiceAny other Organization Name (whether in service OR own business)32. Is the Father covered under any health reimbursement scheme?Central Government Health Scheme (CGHS)Autonomous Institute covered under Central Government Health Scheme (CGHS)Public Sector Undertaking covered by Central or state Govt OR own PSU reimbursement schemeDefense Services covered by Central or state Govt OR own Defense Service reimbursement schemeRailways Services covered by Central or state Govt OR own Railway services reimbursement schemeState Government Health Insurance (SGHI)Employees State Insurance Corporation (ESIC)None of the abovea) If You have Health Insurance,does it cover SMA (Genetic disease) ?YesNo Name of the Health Insurance Company Covering SMA (genetic) disease) 33. Name of Mother/guardian 34. Mother Education35. Mother OccupationState Government ServiceCentral Government ServicePublic Sector UndertakingDefense ServiceRailways ServicePrivate ServiceBusinessConsultant/Self employedFull time CaregiverPart time work and part time CaregiverAny other Organization Name (whether in service OR own business)36. Is the Mother covered under any health reimbursement scheme?Central Government Health Scheme (CGHS)Autonomous Institute covered under Central Government Health Scheme (CGHS)Public Sector Undertaking covered by Central or state Govt OR own PSU reimbursement schemeDefense Services covered by Central or state Govt OR own Defense Service reimbursement schemeRailways Services covered by Central or state Govt OR own Railway services reimbursement schemeState Government Health Insurance (SGHI)Employees State Insurance Corporation (ESIC)None of the above 37. Total Household income (Annual) from all sources ( In Indian rupees)(In Words) ( income In numbers)38. If you have Insurance coverage in case of Hospitalization of SMA patient? Please tick what type? (Choose only one option) (Skip if already answered in Q33 OR Q37)Employee State Insurance CorporationCentral government Health Scheme (CGHS)Public Sector Unit(PSU)RailwaysArmyPrivate Health Insurance such as New India Insurance, TATA AIG, Star Health InsuranceI Do Not have Insurance Any other, pls specify39. If not covered in Insurance, then how do you manage medical emergency, for your SMA child in case of hospitalization? (Choose option/s as applicable) ( Answer only if Q33, Q37 and Q39 last option 'I Do Not Have Insurance' selected )Own expensesSupport from hospitalSupport from other charitable trust/NGOCooperative societyLoan Any other, pls specify40. What is your main source of information on the disease SMA? (Choose option/s as applicable)From my child’s DoctorInternet/self studyMedia/Newspaper/social mediaFrom CureSMA India Any other, Please Specify41. Are you a registered member of Cure SMA Foundation of India (If not still registered, you may do so by visiting www.curesmaindia.org)YesNo42. Do you know your membership number? YesNo Please mention here43. Are you a registered member of any other Patient group/s related to SMA or any other rare diseases? YesNo44. If yes, please specify name of such Patient group (It is absolutely okay even if you are registered, but kindly mention the facts here) Name/s Location of the Patient Group/s45. Do you pay CureSMA India membership fees regularly?YesNo How frequently? (Monthly/Quarterly/Six Monthly/Yearly) When was the last you paid . Approximate month/date. If NO,Please state reason46. Do you participate in activities/meetings regularly?YesNo If Yes, Name few activities you participated. If No, What stops you from participating? Please give two suggestions how we can help you participate better47. Are you active on social media?YesNo If Yes, Name which social media are you active on? If No, Please state reason. Please give two suggestions how we can help you to be more active on social media48. Does SMA patient have any NON SMA sibling? (Information may be updated once in a year)Not applicable, SMA Patient is single childBrotherSister Age of sibling? Occupation of sibling? Any other information (eg twins, two sisters, two brothers etc)?49. Total number of SMA patients in the family?1234If more than one, have you registered all others on www.cresmaindia.org? YesNo50. Has there been any SMA related death in your family before?NoYes If yes, who? When? 51. Remarks: Any other Information you would like to share which is not covered in above questionnaire ? Final Registration * Email Address for registration * Password for registrationStrength: Very WeakAcceptance of 'Hold Harmless declaration' I hereby declare and authorise CureSMA India and its members to share information provided by me to any institution, agency, company, hospital or clinical organisation for the purpose of providing patient information to any of the above institutions/organisations. I do not have any objections to share this information that has been provided above by me to CureSMA India. The information shared by me includes but not limited to - patient information, images, videos, contact details and/or any clinical data. This authorisation is not conditional under any circumstances. My acceptance of this 'Hold Harmless declaration' should be treated as a consent to indemnify CureSMA India from any liability (legal, commercial or penal) arising out of the sharing of the information that has been provided by myself. I AgreeSubmit
