On Wednesday, the Delhi High Court expressed its displeasure about being "kept in the dark" about a Duchenne muscular dystrophy (DMD) trial that was taking place in the national capital while the bench was addressing concerns about the indigenous treatment of the uncommon disease in response to petitions from multiple affected youngsters.

The court ruled that the petitioners who came before it may have taken part in the trial had they been made aware of it earlier, and ordered AIIMS to provide a report on whether or not the kids could take part in the trial following their evaluation. The petitioners are youngsters who have been diagnosed with a variety of uncommon disorders, such as Mucopolysaccharidosis II or MPS II (Hunter Syndrome) and Duchenne muscular dystrophy (DMD).

DMD is a rare genetic disorder that primarily affects boys and results in the gradual weakening of the muscles. It is one of the different types of muscular dystrophy.The doctor from AIIMS who was involved in the case informed the court that "Sarepta" is conducting a clinical trial with a select group of patients, one of whom is the petitioner, and that the corporation has now requested authorization from the relevant authorities to enroll further patients. According to Justice Mrs. Prathiba M. Singh, no one in the current case is "coming clean," and everyone kept the court in the dark.

Last year, the court observed that, because DMD is a rare condition that affects many patients in India, it was imperative to develop a therapy locally to avoid spending money on expensive medications that are difficult to obtain in India. In December 2021, the court issued an order directing AIIMS to immediately begin treating qualified children with rare diseases and requested funding from the Center, stating that it is distressing to watch children in this predicament and that they should not be made to suffer.

The legal counsel representing the Union government stated that the trial in question is a "global clinical trial," and the court was never informed at any point during the trial.