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 News Article 

bullet  Local info on clinical trials can help patients  

 Source: The Straits Times
Monday, 01 | 02 | 2010

By: Salma Khalik

Such a registry gives them a chance to access cutting edge medicines

TEACHER Alvin Chew wonders if his father, who died of blood cancer last year, would still be alive today if he had been admitted to a clinical trial. Such trials sometimes allow patients access to drugs that have yet to be commercially available.

As medical care in Singapore improves, its attraction to large pharmaceutical companies needing to carry out fast and high-quality studies of their new medication has gone up as well.

This gives patients here a chance at cutting-edge medicines that could make a difference between recovery and death.

But as Mr Chew, 39, found out, it is not easy for a patient to learn about such trials. He had asked the oncologist about such trials, when his father was not responding to the standard treatment. But the private doctor was not very helpful.

That is not surprising, since the majority of such trials are done in the public sector. It is possible that the oncologist was not aware of the relevant trials that were being carried out here, since the information is not easy to come by.

This is unlike the situation in countries like the United States, where all clinical trials are listed. A clinical trials registry provides information on what the purpose of the trial is, who is heading it, where it is being done, who may participate and a phone number for people to contact.

Here, the Health Sciences Authority (HSA) says such information is confidential. It will give only overall figures of the number of trials it approved each year, and the general type of diseases involved.

So we know only that there were 286 trials approved in 2008, of which a third were for cancer. But we do not know what types of cancer they were, who was conducting the trial and if they were still recruiting patients.

Should Singapore have a similar website, allowing patients and doctors alike access to what is going on in the clinical trials scene?

Mr Chew certainly thinks so. He said: "It's ironic and saddening to know that Singaporeans who may benefit from these drugs are not given the opportunity for these treatments because of ignorance on their part and because such information is not made available publicly."

Both Associate Professor Goh Yeow Tee, director of clinical research at Singapore General Hospital, and Dr Robert Lim, head of haematology-oncology at the National University Cancer Institute
agreed that a local list might help.

Said Prof Goh: "Listing on a national or institutional website is a good idea as it would increase public awareness about the availability of trials and participation in trials."

But Prof Goh also pointed out that all trials of significance are already listed on the US website www.clinicaltrials.gov

A check by The Straits Times found the site lists 84,458 trials in 171 countries. While some of the Singapore trials mentioned come with full information, others do not even give the name of the principal investigator or a number to contact. Not much help to the average patient.

Dr Lim added that the US site does not list trials that are initiated by doctors here. It is therefore not comprehensive.

On the other hand, a local list helmed by the HSA could provide the public not just with a list of trials, but also other relevant information such as the benefits of taking part in trials, what the exact criteria are for patient selections, and how they can take part. Such a list would
serve several purposes.

First and most importantly, it would allow patients here to find out if there are any trials that could help them - when conventional treatment no longer works.

It would also promote Singapore as a medical hub of note, since trials are usually carried out in places with good clinical practices in place. It lets foreign patients know what is available here and gives them the option of coming to Singapore for treatment.

It would also help doctors involved in such trials to recruit patients expeditiously. Dr Lim said that among the hurdles facing trials is getting the right patient population and getting sufficient numbers of patients.

As Professor Soo Khee Chee, head of the National Cancer Centre, said, every day's delay in reporting results of a trial costs a pharmaceutical company US$1 million (S$1.4 million). Faster recruitment of patients and quicker trial completions might see more high-quality trials coming this way.

As it is, between 2,000 and 3,000 patients are roped in for such trials each year. More trials done here will help even more patients. They will not only get access to drugs that have yet to hit the market, they could also save some money as the cost of the treatment is often borne
by the pharmaceutical company conducting the trial.

St Jude Children's Research Hospital in the United States has an enviable 90 per cent survival rate for children with leukaemia or cancer of the blood. Its patients reportedly have a 20 per cent survival advantage over other hospitals.

A major reason is that almost all its patients are on trials with access to the latest medicines being tested for this range of disease.

While Prof Goh agrees that a national listing would increase public awareness, he, like the HSA, is concerned about confidentiality over who is sponsoring the trial and the drug in question.

However, these are not problems that are insurmountable. At the very least, the information given on the US website should be available here, since it is already in the public domain.

All this would entail a little bit more work for the HSA, perhaps but the benefits both to the nation as well as to patients would certainly justify the effort.