SFRD Patient Onboarding & Health Information Form

Section A: Referee Details

This section helps us understand who has referred you to the SFRD Family. All personal contact information of the referee will be kept strictly confidential and will only be used by the SFRD support team to contact them for further support to you.

Referred by*

Unique ID of Referee (if already part of SFRD)

Details of Referee*

Contact Phone/WhatsApp of Referee*

Our support team will use this number to contact them.

Section B: Patient's Basic Information

This section helps us understand your profile and contact details. All personal information of yours shall be kept strictly confidential and will only be used by the SFRD support team to contact you / parents / caregivers.

First Name*

As it appears on official documents.

Last Name*

As it appears on official documents.

Date of Birth*

Please use the DD-MM-YYYY format.

Date of Enrolment

Auto-set to today's date by the system. Cannot be changed.

Age at Enrolment

Calculated automatically from date of birth.

Patient's Current Status*

Gender*

Country of Residence*

State*

City / Town / Village*

Contact Email

We will use this email to send you updates and connect you with your resources.

Contact Phone/WhatsApp*

We will use this number to send you updates and connect you with your resources.

Social Media Handles (if any)

Add any social links where we can reach out.

Address Details

Current Address*

Please provide complete Current Address with landmark.

Current Address Pincode*

Your pin code will help us know how quickly we can service you, when needed.

Permanent Address *

Same as present address

Please provide complete permanent address with landmark if it is different from the Current Address.

Permanent Address Pincode*

Your pin code will help us know how quickly we can service you, when needed.

Section C: Parental Information

Our support team will use this number to contact your parents / caregivers

Section D: Symptoms & Clinical Features (Phenotype)

Please help us understand the patient's health challenges better. Describe the symptoms or features you have observed, even if they seem unrelated. Needed be, please take help of your Doctor / Clinician or the Patient Onboarding Team at SFRD to fill these details.

Overall Growth & Development

Describe any issues with height, weight, head size, or delays in milestones like walking or talking.

Neurological (Brain & Nerves)

Mention any seizures, muscle weakness, difficulty with balance/coordination, or learning difficulties. Include cognitive /neuro functions.

Skeletal (Bones & Joints)

Describe any unusual bone shape, frequent fractures, joint stiffness, or scoliosis (curved spine).

Cardiovascular (Heart & Blood)

Mention any known heart defects, irregular heartbeat, or bleeding/clotting problems.

Eyes & Vision

Describe any issues like cataracts, poor vision, or unusual eye movements.

Describe any other Major Symptoms

Start typing a symptom. We will suggest matches. You can add multiple symptoms.

Other Symptoms

Describe any other issues which does not fit in above Fields.

Physical Functioning

Please describe physical mobility, daily activity support, school /work participation / support of parents in daily routines.

Section E: Diagnosis Information

This is the most important section. Please provide as much detail as you can about the patient's diagnosis. If you are unsure, please write 'Don't Know' or upload a doctor's report. Can seek support of patient-onboarding team to fulfil this section.

Diagnosis Status*

Has a doctor confirmed the diagnosis?

Date of First Symptom*

When did you first notice symptoms, even if you didn't know the cause?

Efforts Made towards Diagnosis*

YesNo

Did you made any Efforts Made towards Diagnosis?

Section F: Medical History

Current Disease Status*

Please select the option which you feel is probable.

Doctor and/or Hospital Managing Treatment / Care

Each entry is kept in a separate card for clarity

Current Medications

Each medication is shown in its own card

Upload Prescription / Medication List

Note: Supported formats are .pdf,.jpg,.jpeg,.png,.doc,.docx. Maximum file size allowed is 10MB.

Supported formats: PDF, PNG, JPG.

SSurgeries / Procedures Underwent, if any

Please share details if any. (e.g., Heart surgery in 2021)

DMedical Devices Being Currently Used

Select all that apply to the patient.

Section G: Social & Support Functions needed from SFRD

You shall be provided with necessary support as sought from the below information.

Do You Hold Membership in any Expert Patient Organization

Please share details, if any.

Do You Need Genetic Counselling / Psychological Support

Please share details, if any.

Did You Availed Any Government Schemes

Upload supporting documents

Note: Supported formats are .pdf, .png, .jpg, .jpeg. Maximum file size allowed is 10MB.

Please share details, if any.

Preferred Language for Communication*

Need for Financial Support Navigation

Please share details if any.

Need for Home /Transport Support

Please share details if any.

Other Needs

Upload supporting documents (optional)

Note: Supported formats are .pdf, .png, .jpg, .jpeg. Maximum file size allowed is 10MB.

Section H: Consent for Data Use & Sharing

Your privacy is our highest priority. This section explains how your information will be used and asks for your permission. Please read each point carefully. You can change these preferences at any time by contacting us.

Consent to Store and Use Information for Support *
I agree that SFRD can securely store the information I have provided. I understand that the SFRD support team will use this information to contact me, provide guidance, and connect me with relevant resources.Consent for Case Review by Medical Experts *
I agree that a de-identified (anonymous) summary of this health information can be shared with verified medical experts within the SFRD network to help get a clinical opinion. (This means your name and contact details will be removed).Consent for National Research Registry (Optional)
I agree that de-identified (anonymous) health data can be included in a Disease-specific Patient Registry / National Rare Disease Registry. This is vital for researchers to understand these diseases in India and work towards new treatments.Consent for Contact about Clinical Trials (Optional)
I agree to be contacted by SFRD if a clinical trial or a new research study, for which the patient might be eligible, becomes available in India.

Full Name of Person Giving Consent*

Relationship to Patient*

Date of Consent*

Digital Signature*

Typing your full name here acts as your digital signature.

Unique Patient Identifier (UPIN)

Your UPIN will be auto-generated upon form submission. Quote this number to seek all support/help in SFRD Framework.