Verify a Trial & Check Your Eligibility

[Genetic Counselor]

Verify a Trial & Check Your Eligibility

[Genetic Counselor]

A short guidance post to keep this board reliable, expanded with the specific checks that matter for SMA:
1. Always check CTRI (ctri.nic.in) for the registration number before treating any trial as legitimate. Search by disease name (“spinal muscular atrophy”) or by sponsor name — a legitimate trial’s CTRI page will show the sponsor, principal investigator, sites, and current recruitment status.
2. Get your genetic report first, specifically the SMN1 result and SMN2 copy number together — no trial or approved drug decision can be made without this, and a clinic that offers to enrol you or prescribe treatment without asking for it should be treated as a red flag.
3. Contact the trial site directly, using the investigator names and hospital contacts posted in the trial thread — not a third-party agent, broker, or “medical tourism facilitator” offering to arrange enrolment for a fee.
4. Confirm CDSCO approval status before assuming a drug is legally available in India — Approved & Available SMA Drugs in India, lists the current status of Zolgensma, Risdiplam, and Spinraza specifically so members don’t have to guess. A drug being FDA- or EMA-approved does not mean it is approved or legally marketed in India.
5. Be wary of unregistered “treatments” — if a clinic offers an SMA gene therapy, stem-cell treatment, or “compounded” version of any of these drugs with no CTRI number or CDSCO approval reference, treat it as unverified and ask fellow members before proceeding or paying anything.
6. Post updates with sources — when sharing news about a new trial, a drug price change, or a new financial-assistance program, include a link so moderators and members can verify it themselves.

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