Publicity (in Dutch, Spanish, Norsk)

Dear readers,

During the past weeks, articles on our study appeared in Spanish and Dutch newspapers, and on the internet. For those who can read Dutch, Spanish or Norwegian:

Ready to go!

Dear reader,

The ICASA meeting in Barcelona is finished now. Yesterday we ended the training sessions I’ve told you about. At the very end of the conference, I summarized the key messages of this European collaborative initiative: we will determine the relationship between Attention Deficit Hyperactivity Disorder (ADHD) and Substance Use Disorders (SUD). In the coming years 14 addiction treatment centers in 10 countries will include over 6.000 patients with SUD. They will be evaluated for ADHD and 3 other disruptive disorders (bipolar disorder, anti social personality disorder and borderline personality disorder). The first results are expected by June 2010.
We feel that this study is a crucial first step in tackling the problem of ADHD in addiction. Having more knowledge of the size and scope of ADHD in SUD patients will add to a better understanding of the relevance of ADHD in this patient group and of the relation between these two chronic disorders.
During our conference the last few days, all participating countries came up with ideas and suggestions to optimize set-up, funding, logistics and publication of the study. That was fruitful for Wim van de Brink and I, as organizing committee. Monday back at the office we will immediately follow-up al lot of these leads and ideas; however in fact we can say: all is set and ready to go!
Some countries start very soon, others in the beginning of 2009. The next plenary ICASA meeting will be in spring 2009, probably in Stockholm. Shall I blog then again?

Finally: one idea we discussed here, is to open a more comprehensive website with detailed information of the study and the status in the countries. This blog could be part of it, and there may be more interactive items. If budget allows us to produce it, and that site is launched, I’ll tell you over here!

So we are ready to go. Suitcase is packed. Study can start. Mission accomplished.

Geurt

Practical details

Good morning!

The second day of the ICASA meeting was very lively. We’ve had discussions on several practical aspects that are important to manage the trial.
Data-managament: this will be done with a sophisticated system of Amsterdam Medical Centre AMC. Input of all CRF’s goes trough secure internet connections and the database is optimally guarded.
Finance: we have substantial central funding; however the participating centers will have to generate additional local funding. Transparency and independency is of outmost importance in this, we all agreed. We discussed the do’s and don’ts with this financial part,
Communication: we defined the key messages in our external communication, and exchanged views on how ADHD, SUD and psychiatric research are perceived in public opinion in the various countries. We have to take cultural differences into account when informing society of this important scientific work; e.g. it is essential that one understands that ICASA’s goal is to find evidence based diagnostic and treatment procedures. It is neither a disease awareness project nor a population-screening programme.

Furthermore, the first trainingsession commenced, to get all researchers trained in the specific diagnostic tools we use. Today we will go on practicing patient-interviews, and we’ll video-tape the individual training sessions to maximize the benefit of this. Could be fun as well! In this way we are prepared to handle all patient-interaction situations in real life practice.

Genetic study: GO!

Genetics of Substance Use Disorders and ADHD

Yes! We’ve got the go-ahead and will develop this study.
Yesterday evening we had this extra meeting on developing a research project on the genetics of SUD and ADHD. Before discussing this in the entire group of ICASA-researchers we discussed the plan with a smaller group. It proves to be a challenge to design a proper study. We need large samples of patients, with well defined diagnoses.
The costs involved for analyzing DNA samples are impressive. Via ICASA we have access to large numbers of patients with SUD. And we have world class experts and institutes on board: Columbia University (New York), Karolinska institute (Stockholm), Curtin University (Perth) and University Vall d’Hebron (Barcelona) to mention a few.
Today (Friday) we will discuss the genetics study in the plenary ICASA meeting.

Geurt

Headlines#3: science versus anecdotes

Here are the last headlines of today:

Miquel Casas, Barcelona. “There are no miracles in science!” He pointed on the self-medication hypothesis: some patients may in fact use cannabis or cocaine to control their (undiagnosed) ADHD. That prompted the idea that ADHD-treatment would easily solve the hard drug abuse… That turned out not to be so simple. “Complex behaviour, comorbidity, social factors and neuro-adaptive processes are not altered after one session,”, Casas said.

Van den Brink: “ADHD and SUD: double diagnosis – double trouble, both for patients and for society.” He pointed out, that these diseases may have common factors, however: “if you share things, that does not mean you are identical. We have to build science and clinical evidence on the two interacting disorders ADHD and SUD. We have to distinguish anecdotes from science. Every patient is different. Our patient-population is extreme heterogeneous. Hence we encourage polypharmacy and polytherapy, to cover both diseases,” Van den Brink concluded.

Headlines#2: get physical and don’t expect miracles

I’m happy to inform you on two more headlines of presenters today:

Eva Karina Lovaas, Bergen Clinic, Norway. “One of my patients – a former heroine addict – now runs several kilometres in the morning, during lunchtime and in the evening again. Moreover, he runs every time before his regular visits to the clinic. People say he is addicted. In that way: great!” Lovaas explained that – besides pharmacotherapy and psychotherapy – structural physical exercise is nowadays an important aspect in the Bergen treatment programmes: all patients are offered to choose from three timeslots for sports a day.

Dr Antonia Teran Priero, Palencia. “Taking a patients’ history and family anamnesis, is like working in a rich historical excavation.” Priero said that thorough knowledge of local society, expressions, sometimes even slang is needed for full understanding of the stories of patients and relatives. He added that data in Spain clearly endorse the statement that ADHD is a problem in 1 out of 5 adults with substance abuse. However, this scientific fact is not yet fully accepted among public health policy makers in his country, according to Priero.

Headlines#1: quality and evidence based care

Some first headlines of today:

Dr PJ Carpentier, psychiatrist: “Integrated detection, diagnosing and treating ADHD in SUD patients is a mark of quality in psychiatric care”. Carpentier stated that the main challenge in offering quality care is to set up and maintain an integrated approach in the clinic.

Frances Levin, NY:, “One should not only ask scientists to their data on these complex trails on ADHD and SUD. Ask their opinion as well.” She presented an overview of trials that show little or no improvement in SUD, when ADHD is treated in addicted patients. In her opinion, the studies should be better designed in future. Larger samples, robust dosing, longer-acting formulations, careful compliance support. In the end, clinicians and patients will benefit from new, evidence based treatment algorithms, according to Levin.

Started

Just started the programme! I will keep you posted.

Behavioural observations

Some people hate waiting at airports and train stations, but I don’t! Airplanes and airports are interesting places to observe fellow travellers. From my sociological background, I like to spot behaviour and consider what’s behind. The guy with the red pants who disrespected the queue at the check-in desk. The young woman that seemed to be so afraid of flying that she did not dare to let loose of her partner for one second. The flight attendants that remain friendly and cool whatever happens (although you clearly see differences between the crewmembers as to what respect they cope with the stress).

So behavioural observation is a nice way to pass waiting. Nice, but not comparable at all with behavioural research in our professional life. For science we systematically observe and develop validated tools for that. Just like the three tools we use in the ADHD trial. We need validated tools for screening and diagnosing ADHD in Substance Use Disorders (SUD) patients. We will evaluate 6.000 SUD patients aged 18 to 65, for ADHD and other disruptive behaviours. In doing so we will be able to validate the tools we use. That would contribute to one of the four goals of ICASA: development, testing and implementation of evidence based procedures for diagnoses of ADHD in patients with SUD. We need this procedure for a secondary goal: obtain clear prevalence rates of ADHD in patients with Substance Use Disorders (SUD).

Right now I’m preparing the presentation and the speakers briefing. The agenda is fully packed. I hope I find half an hour in between to visit the big Gaudi church-under-construction (since 1882!). To gaze the tremendous project, and maybe to say a prayer that all others will safely arrive as well at our congress venue in time tomorrow and the day after!

Geurt

Genetic study challenge

Dear reader,

One of the comments a reader of this blog posted, was on children with ADHD that do or don’t develop substance abuse and the uncertainty this brings to parents. For sure, it would be interesting if we could tell on beforehand – or at least at the onset of the pathology: sufficient treatment could start earlier, with definitely beneficial effect.
This issue – prediction and early diagnosis of disease development – is exactly the reason that we consider to start a genetic sub study along the main ICASA trial.  Can we find particularities in the genetic constitution of ADHD-patients that predict SUD-risks or – on the contrary – guard for developing substance abuse? Coming Thursday we planned an extra meeting with the team that will be decisive for this extra study. Of course it is best to start collecting DNA-samples
simultaneously, at the very first visit of the patients according to the core study protocol. If we would have to start DNA-sampling later, it would be tremendously complicated to arrange secure DNA-sampling of all patients included.
However, this genetic study is a challenge in itself: scientific, logistically and financially. But now is the time we must decide on this: do we go ahead with this genetic part, or not. Tuesday is
decisive. I’ll let you know what comes out!

Geurt