Questions to ask your doctor: CRISPR and AI for Rare Genetic Diseases: 2026 Guide

A printable checklist to take to your appointment. Based on our guide CRISPR Gene Editing and AI Diagnosis for Rare Genetic Diseases: 2026 Guide.

1. Has my genetic cause been confirmed, and would genome sequencing or reanalysis of earlier results help?
2. Are AI-supported tools used in your genetics laboratory, and could my old data be looked at again?
3. Am I eligible for Casgevy or a gene-editing trial, given my age, disease severity and organ health?
4. How does gene editing compare with a stem cell transplant from a donor, if I have a matched sibling?
5. What are my personal risks from the chemotherapy, including fertility, and what fertility preservation is available?
6. Which authorised treatment centre would I go to, and how many patients has it treated?
7. How long will the whole process take, and how long will I be in hospital?
8. Who pays, and what would I need to cover myself?
9. What follow-up will I need, and for how many years?
10. What results can I realistically expect, and what damage might not improve?

Also worth asking

1. Is Casgevy a cure for sickle cell disease?
2. How much does CRISPR gene therapy cost?
3. Can children get Casgevy?
4. Why do you need chemotherapy for gene editing?

My notes

This checklist is general information, not medical advice. Your doctor knows your situation best.