info@curesmaindia.org | +91 78785 51885

Patient Registration

Section 1: SMA Patient Information:

1.Name of Patient

Name of Patient Text field can not be left blank.

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2. Date of Birth

* 2. Date of Birth

Please select date.

Invalid Date.

3. Sex

Male

Female

Please select one option.

Please enter valid data.

4. SMA Type

Type1

Type2

Type3

Type4

Please select one option.

Please enter valid data.

5. Do you have Genetic Test Report

Yes

Please select one option.

Please enter valid data.

If You Wish to get Genetic test done, contact CureSMAIndia - info@curesmaindia.org | +91 78785 51885

6. Please upload the Genetic Test Report

* 6. Please upload the Genetic Test Report

Drop file here or click to select.

Please select file.

Invalid file selected.

7. SMA confirmed by (Genetic test)

SMN 1 deletion

Muscle biopsy

Clinically by Doctor

Any other

Please select one option.

Please enter valid data.

please specify

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8. No. of SMN 2 copies

0 copy

1 copy

2 copies

3 copies

4 copies

5 or more copies

Do Not Know

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Do You Wish to Know SMN 2 Copies number ? Then Contact - info@curesmaindia.org | +91 78785 51885

9. Contact No

Fathers Number

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Mothers Number

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SMA Patients self Contact Number

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Guardians Contact Number

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10. Current Address

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11. City/town/village of Residence

City of Residence can not be left blank.

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12. State of Residence

State of Residence can not be left blank.

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13. Permanent address (mention only if it is different than above current address)

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Pin Code

* Pin Code

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Section 2: SMA Patient's Present Condition To be updated every six months:

14. In following section, please update present condition of your SMA child/patient

15. Ambulatory/non-ambulatory (Walking abilities)

Can walk independently

Can walk with orthotic support

Can stand independently

Can stand with orthotic support

Can sit independently

Can sit with support (spinal brace)

Can sit with support (any other support)

Cannot sit at all

Not applicable ( Child is below one year age. )

Please select one option.

Please enter valid data.

16. What is the weight of SMA patient?

* 16. What is the weight of SMA patient?

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17. Breathing condition: Is SMA Patient able to breathe comfortably?

Yes

Please select one option.

Please enter valid data.

Non-invasive ventilation (BiPAP) dependency

Yes

Please select one option.

Please enter valid data.

18. Invasive ventilation (Tracheostomy) dependency

Yes

Please select one option.

Please enter valid data.

19. Feeding tube (G-tube/NG-tube) dependency

Yes

Please select one option.

Please enter valid data.

When was the surgery done ?

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In which Hospital?

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By which Doctor/surgeon?

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Contact details of Doctor/Surgeon-Email/Phone Number ?

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20. Spine condition (Scoliosis of spine) - Has spine/scoliosis surgery been done?

Yes

Please select one option.

Please enter valid data.

a) In which year?

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b) By which Doctor/spine Surgeon?

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c) In Which Hospital ?

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d) In case of scoliosis/bent spine, does the SMA Patient use spinal brace?

Yes

Please select one option.

Please enter valid data.

Do You Need help Support ? Contact - info@curesmaindia.org | +91 78785 51885

e) Do you know SMA Patient’s Scoliosis cobb angle?

Yes

Please select one option.

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f) Do You Need Help ?

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g) Please Mention Cobb angle

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h) Name and Contact details of Spine Doctor who helped you to measure Cobb angel -

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i) Please Mention Company Name Who Made Spinal Brace ?

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J) Contact details of Doctor/Surgeon-Email/Phone Number ?

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21. Other deformities if Any

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22. Current SMA Management

Is your child undergoing regular physiotherapy session?

Yes

Please select one option.

Please enter valid data.

Do you need support to start physiotherapy

Yes

Please select one option.

Please enter valid data.

Do you need support to start proper Nutritious Diet?

Yes

Please select one option.

Please enter valid data.

23. Does SMA Patient use Wheelchair?

Yes

Please select one option.

Please enter valid data.

a) Wheelchair

Pediatric manual

Pediatric motorized

Manual

Motorized

Please select one option.

Please enter valid data.

24. Regular Doctor (to whom you visit frequently) Name

* 24. Regular Doctor (to whom you visit frequently) Name

Regular Doctor Name can not be left blank.

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25. Regular Hospital (where you visit for common health problems with SMA patient/child) Name

* 25. Regular Hospital (where you visit for common health problems with SMA patient/child) Name

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26. SMA Patients regular monitoring parameters To be updated every six months:

Date

* Date

Please select date.

Invalid Date.

Chop Intend Score (Type of Muscle charting)

Yes

Not applicable

Please select one option.

Please enter valid data.

Mention Chop Intend score

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Hammersmith Scale Score (Type of Muscle charting)

Yes

Not applicable

Please select one option.

Please enter valid data.

Mention Hammersmith score

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Assessment of motor performance of upper limbs - RULM Score

Yes

Not applicable

Please select one option.

Please enter valid data.

If yes, mention RULM score

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Lung function OR Pulmonary Function test score

Yes

Not applicable

Please select one option.

Please enter valid data.

Mention % of lung function

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Cobb Angle in case of scoliosis (Bending of spine)

Yes

Not applicable

Please select one option.

Please enter valid data.

Mention degree of cobb angle

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27. Has your SMA child received any SMA medicine till now?

Yes

Please select one option.

Please enter valid data.

A(i) Spinraza through SIPHAP program

Doctor Name

Hospital Name

Please select one option.

Please enter valid data.

A(ii) Are you seeing any improvement in your child? Even small improvements are counted

Very minor improvement

Satisfactory improvement

Substantial improvement

No Improvement

Please select one option.

Please enter valid data.

A(iii) Are you continuing with Physiotherapy post medicine access?

Yes

Please select one option.

Please enter valid data.

A(iv) Are you continuing with proper Nutritious Diet post medicine access?

Yes

Please select one option.

Please enter valid data.

B(i) ZolgenSMA through MAP program

Doctor Name

Hospital Name

Please select one option.

Please enter valid data.

B(ii) Are you seeing any improvement in your child? Even small improvements are counted

Very minor improvement

Satisfactory improvement

Substantial improvement

No Improvement

Please select one option.

Please enter valid data.

B(iii) Are you continuing with Physiotherapy post medicine access?

Yes

Please select one option.

Please enter valid data.

B(iv) Are you continuing with proper Nutritious Diet post medicine access?

Yes

Please select one option.

Please enter valid data.

C) Risdiplam through CUP,

Doctor Name

Hospital Name

Please select one option.

Please enter valid data.

C(ii) Are you seeing any improvement in your child? Even Small improvements are counted

Very minor improvement

Satisfactory improvement

Substantial improvement

Please select one option.

Please enter valid data.

C(iii) Are you continuing with Physiotherapy post medicine access?

Yes

Please select one option.

Please enter valid data.

C(iv) Are you continuing with proper Nutritious Diet post medicine access?

Yes

Please select one option.

Please enter valid data.

Section 3: SMA Patient Occupation Information

28. Patient Education/Occupation

Not enrolled in school as child cannot sit

Not enrolled as child is too small/not eligible to go to school

Not enrolled due to society/family issues

Studying in special school

Studying in government (regular) school

Studying in private (regular) school

Studying in College/University

Taking Home Schooling

Working (government job)

Working (private job)

Working (outside India)

Self employed/Own Business

Working with NGO

Working for social cause

Joined family Business

Please select one option.

Please enter valid data.

29. Hobbies of SMA Patient? To be updated every year.

* 29. Hobbies of SMA Patient? To be updated every year.

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Section 4: Parents/Guardian’s back ground Information

30. Name of Father/Guardian

Name of Parent/Guardian can not be left blank.

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31. Father Education?

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32. Father Occupation

State Government Service

Central Government Service

Public Sector Undertaking

Defense Service

Railways Service

Private Service

Business

Consultant/Self employed

Full time Caregiver

Part time work and part time Caregiver

Retired from Central Government Service

Retired from State Government Service

Retired from Private Service

Any other

Please select one option.

Please enter valid data.

Organization Name (whether in service OR own business)

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33. 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 scheme

Defense Services covered by Central or state Govt OR own Defense Service reimbursement scheme

Railways Services covered by Central or state Govt OR own Railway services reimbursement scheme

State Government Health Insurance (SGHI)

Employees State Insurance Corporation (ESIC)

None of the above

Please select one option.

Please enter valid data.

34. Name of Mother/guardian

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35. Mother Education

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36. Mother Occupation

State Government Service

Central Government Service

Public Sector Undertaking

Defense Service

Railways Service

Private Service

Business

Consultant/Self employed

Full time Caregiver

Part time work and part time Caregiver

Any other

Please select one option.

Please enter valid data.

Organization Name (whether in service OR own business)

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37. 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 scheme

Defense Services covered by Central or state Govt OR own Defense Service reimbursement scheme

Railways Services covered by Central or state Govt OR own Railway services reimbursement scheme

State Government Health Insurance (SGHI)

Employees State Insurance Corporation (ESIC)

None of the above

Please select one option.

Please enter valid data.

38. Total Household income (Annual) from all sources ( In Indian rupees)

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(In Words)

( income In numbers)

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39. 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 Corporation

Central government Health Scheme (CGHS)

Public Sector Unit(PSU)

Railways

Army

Private Health Insurance such as New India Insurance, TATA AIG, Star Health Insurance

I Do Not have Insurance

Please select one option.

Please enter valid data.

Any other, pls specify

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40. 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 expenses

Support from hospital

Support from other charitable trust/NGO

Cooperative society

Loan

Please select one option.

Please enter valid data.

Any other, pls specify

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41. What is your main source of information on the disease SMA? (Choose option/s as applicable)

From my child’s Doctor

Internet/self study

Media/Newspaper/social media

From CureSMA India

Please select one option.

Please enter valid data.

Any other, Please Specify

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42. Are you a registered member of Cure SMA Foundation of India (If not still registered, you may do so by visiting www.curesmaindia.org)

Yes

Please select one option.

Please enter valid data.

43. Do you know your membership number?

Yes

Please select one option.

Please enter valid data.

Please mention here

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44. Are you a registered member of any other Patient group/s related to SMA or any other rare diseases?

Yes

Please select one option.

Please enter valid data.

45. 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

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Location of the Patient Group/s

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46. Do you pay CureSMA India membership fees regularly?

Yes

Please select one option.

Please enter valid data.

How frequently? (Monthly/Quarterly/Six Monthly/Yearly)

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When was the last you paid . Approximate month/date.

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If NO,Please state reason

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47. Do you participate in activities/meetings regularly?

Yes

Please select one option.

Please enter valid data.

If Yes, Name few activities you participated.

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If No, What stops you from participating?

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Please give two suggestions how we can help you participate better

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48. Are you active on social media?

Yes

Please select one option.

Please enter valid data.

If Yes, Name which social media are you active on?

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If No, Please state reason.

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Please give two suggestions how we can help you to be more active on social media

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49. Does SMA patient have any NON SMA sibling? (Information may be updated once in a year)

Not applicable, SMA Patient is single child

Brother

Sister

Please select one option.

Please enter valid data.

Age of sibling?

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Occupation of sibling?

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Any other information (eg twins, two sisters, two brothers etc)?

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50. Total number of SMA patients in the family?

Please select one option.

Please enter valid data.

If more than one, have you registered all others on www.cresmaindia.org?

Yes

Please select one option.

Please enter valid data.

51. Has there been any SMA related death in your family before?

Yes

Please select one option.

Please enter valid data.

If yes, who? When?

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52. Remarks: Any other Information you would like to share which is not covered in above questionnaire ?

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Final Registration

Email Address for registration

* Email Address for registration

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This email is already registered, please choose another one.

Password for registration

* Password for registration

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Acceptance 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.

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