|Year : 2014 | Volume
| Issue : 1 | Page : 10-14
Central registry in psychiatry: A structured review
Jyoti Prakash1, TS Ramakrishnan2, RC Das1, K Srivastava3, Suresh Mehta4, R Shashikumar1
1 Department of Psychiatry, Armed Forces Medical College, Pune, Maharashtra, India
2 Associate Professor, Community Medicine, Armed Forces Medical College, Pune, Maharashtra, India
3 Scientist F and Clinical Psychologist, Armed Forces Medical College, Pune, Maharashtra, India
4 Department of Psychiatry, DY Patil Medical College, Pune, Maharashtra, India
|Date of Web Publication||18-Nov-2014|
Professor Psychiatry, Armed Forces Medical College, Pune - 411 040, Maharashtra
Source of Support: None, Conflict of Interest: None
| Abstract|| |
Background: Central registry in psychiatry is being practiced in few countries and has been found useful in research and clinical management. Role of central registry has also expanded over the years. Materials and Methods: All accessible internet database Medline, Scopus, Embase were accessed from 1990 till date. Available data were systematically reviewed in structured manner and analyzed. Results: Central registry was found useful in epidemiological analysis, association studies, outcome studies, comorbidity studies, forensic issue, effective of medication, qualitative analysis etc., Conclusion: Central registry proves to be effective tool in quantitative and qualitative understanding of psychiatry practice. Findings of studies from central registry can be useful in modifying best practice and evidence based treatment in psychiatry.
Keywords: Central registry, epidemiology, psychiatry
|How to cite this article:|
Prakash J, Ramakrishnan T S, Das R C, Srivastava K, Mehta S, Shashikumar R. Central registry in psychiatry: A structured review. Ind Psychiatry J 2014;23:10-4
Central registry is a systematic method of collection of various medical and demographic parameters of a specific population or patient; which is held centrally for subsequent retrieval. Theses registries serve various functions like monitoring and enhancing the quality of treatment etc.  Psychiatric case registers have proved to be an important research tool and its use in epidemiological research has brought out many associations which otherwise would not have been possible. Denmark has been a pioneer for many years in bringing out significant research findings from data available on patients since their hospitalization. 
General aims of psychiatric registry are assessment of disease burden due to psychiatric illness by quantification of morbidity, gauzing geographical and temporal pattern; identification of risk factors and vulnerable population; evaluation of management of psychiatric illness and creating venue and interest for research in epidemiology of mental illness. 
Registers can provide valuable information about particular illness which can be easily accessed. They are a source of data for interested researchers, and a tool for planning care of psychiatric patients and their follow-up. These registers are particularly useful for rare illnesses if the coverage by the registry is good. Unique characteristic of a registry is that there is a specific group with a common illness or common health care service and the health related information mostly involves presentation of illness, clinical features, course and the nature of outcome rather than the risk of an illness in general.  Thus it provides an economical and easy opportunity for research; with relative high accuracy and less selection or recall bias. 
Interpretations of psychiatric registers have led to salient findings in the evaluation and management of psychiatric disorders.
A web based search of all relevant literature was done. Search engines like pubmed, google scolar etc., were used to extract relevant articles. Keywords used were registry, psychiatry, morbidity and epidemiology. Relevant literature thus obtained were analyzed and salient feature were brought in for the review.
| Structured review|| |
In Malaysia, National registry of Schizophrenia was studied between 2003 and 2005. Incidence was 5 per 100,000 population/year. Most of them were between 20-40 years of age; 4/5 th were separated or single. Majority had secondary level education. Around 2/3 rd of the patients were unemployed. 60% had normal body mass index (BMI). History of schizophrenia in family was present in 23%. Mean duration of untreated psychosis was 28.7 months. 20% had comorbid psychiatric illness with substance abuse taking the lead. Less than half of the patients were brought at family's behest. Three fourth of the cases were give single antipsychotic where as 12% patients were started with two or more antipsychotic from the outset itself. 
Malhotra et al.,  of Post Graduate Institute of Medical Education and Research, Chandigarh; studied the profile of child psychiatric patients from 1980 to 2005 in their Child and Adolescent Clinic and measured trend over 1980-1989 (Period I), 1990-1999 (Period II) and 2000-2005 (Period III). Most of the patients were male between 10-15 years. Mental retardation was most common followed suit by neurotic and stress related disorders, hyperkinetic and conduct disorders and epilepsy and organic brain disorder. Over the years number of patients with mental retardation and organic brain disorder decreased where as affective, psychotic and externalizing disorders increased. Number of patient decreased in younger age-group and increased in vice versa.
Roy Chengappa et al.,  studied Stanley Center bipolar disorder registry to find out the age on onset of illness between two decades. The median age was found to be 4.5 years lower in patients born during or after 1940 than those born before 1940. Later birth cohort had higher prepubertal onset. More than half the population had depression as first episode. Episode came up 4-5 years earlier in patients with family history of bipolar disorder, depression or the schizophrenia.
A total of 43, 274 patients treated by Massachusetts Mental Health Department were evaluated for year of life lost by gender and causation of death. Out of 1,890 deaths; accidental and intentional injury, particularly due to psychiatric drugs were frequent. Deaths due to cancer, diabetes or cardiovascular disorders were less. Loss of life due to mental illness was 8.8 years more than the general population. 
Garre-Olmo et al.,  from Spain presented the findings from the epidemiological data of Registry of Dementia of Girona Study Group (ReDeGi Group). Of the 577 cases 60.7% were Alzheimer's disease. Around 9.3% had presenile dementia. Mean time from the symptom onset to diagnosis was 2.4 years. Dementia was of mild severity in 60.7% cases. Hypertension, dislipidemia and genetic loading of dementia and depression was common in these patients.
Kendler et al.,  studied the association between life events and the onset of depression over 1-year in female twins of a population-based registry at Virginia. Degree and nature of relation between stressful life event and respondent's behavior was rated by discrete-time survival analysis and co-twin control analysis. After controlling the level of threat association was stronger for dependent than the independent stressful events. The odds of developing major depression in the very month of stressful life event were 5.64. Findings suggested a causal relationship between stressful event and major depression. However it was also noted in one third that the predisposed person themselves select the high risk situations.
Byrne and colleagues  estimated the risks of schizophrenia and age at first contact and its relation with the range of psychiatric diagnoses in family in 7704 cases admitted form 1981-1998; via Danish Central Psychiatric Registry. After controlling for socio-economic factors, positive family history of all psychiatric disorder was a risk factor for schizophrenia, which was inversely related to age of first contact with psychiatric facility. Nordentoft and colleagues estimated absolute risk of suicide form Danish longitudinal registry data. A total of 176 347 persons born between 1955-1991 were followed-up after 15 years of age till 2006. Absolute risk of suicide in men was found highest for bipolar affective disorder followed by unipolar disorder and schizophrenia. Highest risk in women was found with schizophrenia followed by bipolar disorder. Risk increased significantly with co morbid substance abuse, deliberate self harm and unipolar affective disorder. 
Kessing and Andersen from Denmark came up with question that does the risk of developing dementia increase with the number of episodes in patients with depressive disorder and in patients with bipolar disorder? A case register study of admissions with primary affective disorder from 1970-99 was done to study its effect on rate of readmission with diagnosis of dementia. Risk of dementia was found to increase with number of bipolar and depressive episodes. 
Koenen et al., studied association of posttraumatic stress disorder (PTSD) with nicotine dependence (ND). 6744 Vietnam Era Twin Registry members were interviewed. Prevalence of ND was higher in trauma-exposed (52.0%) and PTSD individuals (71.7%) than those unexposed (40.5%). Shared genetic effects could explain 63% of the association. Data suggested that the veterans with history of ND are at an increased risk of PTSD. 
Elklit and Shevlin studied association between trauma exposure and psychosis from Danish Psychiatric Central Register data. All female rape center attendee of the year 2003 and age and area matched controls were looked for previous and subsequent diagnoses of psychosis. Study revealed increased likelihood of psychosis following sexual victimization suggesting role of traumatic episode in etiology of psychosis. 
Chee et al., investigated the Malaysian Schizophrenia registry for association between duration of untreated psychosis (DUP) and sociodemographic and clinical features of patients. The indigenous community had shorter DUP than the Chinese, Indian and Malayan community suggesting role of traditional values and social ties. Feminine gender, low education status and comorbid medical illness was associated with longer DUP. 
Hjerl and colleagues studied a cohort of Danish Psychiatric Central Register and Cancer Registry; linkage made possible using personal identification number. Incidence of breast cancer in all women admitted to psychiatric hospitals between 1969 and 1993 with affective or neurotic illness was compared with national incidence rates. Diagnosis, age at entry/breast cancer, alcohol/drug abuse, number/length of admissions or time from first admission did not show a statistically significance. Hypothesis that women admitted to psychiatric department with affective or neurotic disorder have increased risk of breast cancer was rejected. 
Brommelhoff et al., studied a population based Swedish twins sample to find out whether history of depression is related to increased likelihood of having dementia and whether depressive episode earlier in life is associated with increased likelihood of dementia. Results showed that recent registry-identified depressed people were almost four times more likely to have dementia, while depression earlier in life did not have increased risk. Co-twin analyses found that prior depressed people were three times more likely to get dementia than the non-depressed twin. Findings suggest that the late-life depression may be a prodrome rather than the risk factor for dementia. 
Kendler and colleagues studied Swedish population-based twin registry to clarify sources of MD-CAD comorbidity. Depression was assessed with personal interview and CAD from discharge records or death certificates. There was modest lifetime association between the two (odds ratio ~1.3). Ongoing CAD risk was strongly related to depressive severity and recurrence. Twin models revealed modest comorbidity between MD and CAD primarily from shared genetic effects in women. Source of comorbidity in men was environmental in older members and largely genetic in the younger sample. Sustained effect of CAD onset on the risk of MD was much stronger than the vice versa. 
Roy Chengappa and colleagues from Pittsburgh randomly selected 100 registrants from a voluntary case register of bipolar disorder to assess prevalence of substance abuse dependence among bipolar I versus bipolar II disorder patients. Alcohol was found to be the most abused drug among both bipolar I and II subjects. Registry suggested high prevalence of comorbidity with substance abuse dependence. Bipolar I patients had higher rates than bipolar II patients, though the bipolar II patients were smaller in number. 
Zonana et al., did analysis of Not guilty by reasons of Insanity Registry (NGRl ): Comprehensive database of Law and Psychiatry at the Yale University School of Medicine. Analyses suggested regional differences in diagnoses and crimes committed.  Subsequently Zonana et al., further worked on sex differences. Results indicated that women NGRls were of older age, married, used substance less, had less criminal records and got released from the hospital sooner than the men counterpart. White women had less criminal records and were hospitalized for lesser periods than minority counterpart. Strongest predictors for criminal recidivism came out to be race and a diagnosis other than psychosis. 
Zatzick et al., researched on incidence, length of inpatient stay, and treatment cost recognized psychiatric patients undergoing trauma surgery at University of California Davis Medical Center. All trauma-registry recorded psychiatric patients were identified between 1993-1996. Alcohol abuse diagnoses had 10%-12% decreases in length of stay (LOS) and cost, whereas stress disorders, delirium and psychoses constituted 46%-103% increase. 
Rabinowitz and Fennig studied the Israeli National Case Registry to find out the differences in age of first hospitalization for schizophrenia among immigrants and non-immigrants. All first hospital admissions from 1978-1992 (N = 10,902) were extracted from Israeli Psychiatric Hospitalization Case Registry. Immigrants were of more age at time of first hospitalization. Age of second generation immigrants was similar to people with native-born parents. Result suggested a delaying effect of migration on the age of first admission. 
Kupfer et al., compared clinical characteristics and treatment history of African-American and Caucasian participants in the bipolar disorder registry of Western Pennsylvania. Two thousand seven hundred and eighteen registry participants was analyzed for these characteristics. African-Americans reported greater number of inpatient hospitalizations and suicide attempt. These findings provide impetus for specific community intervention. 
Sullivan et al., studied subtypes of major depression (MD) with 'typical' vegetative features and atypical features on 6846 individual twins of population-based registry. Nine 'A' criteria of DSM-IV MD were unpacked and nature of sleep disturbance, appetite and weight changes and motor abnormality were recorded. Latent class analysis was used for creating an empirical typology. Seven latent classes provided the best representation of the data; of which most severe of these had interpretable profiles corresponding to typical MD, atypical MD and minor but important depressive states. There tended a gradient with typical class being the most extreme, atypical class intermediate and minor depressive classes the least. 
Effect of medication
Erlangsena et al., studied Denmark population register for relation of early discontinuation of antidepressant medication to the risk of suicide in persons aged 50 and over. 78,594 men and 138,529 women were started on antidepressant medication. People who discontinued treatment early had suicide rate of 167 per 100,000 versus 175 per 100,000 in those who continued. Suicide rate in women who discontinued treatment was 52 per 100,000 as compared to 74 per 100,000 in women who continued. Although previous psychiatric admissions had higher risk of suicide than those without; difference was not found significant in adjusted model. Lower suicide risk was not found among people over age 50 that adhered to treatment than those who did not. 
Nielsen and fellow researchers worked on Danish Central Psychiatric Research Registry to find out the association of antipsychotics to the development of type II diabetes in all antipsychotic-naıve schizophrenia patients diagnosed between 1997 and 2004 > followed till 2007. Out of 7139 patients, 307 developed diabetes. Factors associated with diabetes within 3 month included treatment with low-potency FGAs, olanzapine and clozapine. Aripiprazole had lower diabetes risk. Patients who discontinued olanzapine or mid-potency first generation antipsychotic (FGA) did not have increased risk of diabetes. 
Dalton et al., assessed cancer risk among the users of neuroleptic medication in a Danish nationwide population based cohort of 25 264 users. Neuroleptic use was associated with decreased risk for rectal cancer in gender and for that of colon cancer in female users. Some risk was seen reduced in prostate and breast cancer. 
Bramness and colleague examined use of antidepressants by drivers and increased risk of traffic accidents from Norwegian population-based registries. It took into account 20,494 road accidents occurred which included 204 and 884 drivers of sedating antidepressants or nonsedating antidepressants respectively. Risk increased slightly for the drivers on antidepressants. Estimates were slightly higher for young drivers and sedative antidepressants. 
Clausen and colleagues did a prospective cross-registry study and 7 years follow-up of a Norwegian opioid maintenance treatment.(OMT) program to study mortality in OMT. All 3789 opiate dependents who applied for OMT were cross-linked with death registry data. Mortality in treatment reduced to RR 0.5 (relative risk) as against pre-treatment. With "intention-to-treat", mortality risk was found reduced by RR 0.6 compared to pre-treatment. The patients who left treatment showed higher mortality especially in males. Thus OMT did reduce mortality risk. 
Chee et al., studied the outcomes of first-episode schizophrenia (FES) at 1-year follow-up from Malaysian National Mental Health Registry. Of 2604 registered patients only 37.7% had the outcomes successfully assessed. Two patients committed suicide. Weight gain and BMI were two major concerns. Employability improved. Forty percent patients had antipsychotics changed over 1-year period. 20% of subjects were on polytherapy at baseline and after a year. Use of anticholinergic medication dropped remarkably after 1-year of treatment. 
| Conclusion|| |
The above findings aptly highlight the role of central registry as a valuable tool in research. Relatively lack of such registry in Indian context handicaps us significantly for robust clinical research. A centralized registry system will yield a wider and better picture of our psychiatric practice and lacunae in the same. This will sketch the pathway for better therapeutic management system in future.
| References|| |
Arts DG, De Keizer NF, Scheffer GJ. Defining and improving data quality in medical registries: A literature review, case study, and generic framework. J Am Med Inform Assoc 2002;9:600-11.
Uggerby P, Østergaard SD, Røge R, Correll CU, Nielsen J. The validity of the schizophrenia diagnosis in the Danish Psychiatric Central Research Register is good. Dan Med J 2013;60:A4578.
Aziz AA, Salina AA, Abdul Kadir AB, Badiah Y, Cheah YC, Hayati AN, et al
. The National Mental Health Registry (NMHR). Med J Malaysia 2008;63:15-7.
Stewart R, Soremekun M, Perera G, Broadbent M, Callard F, Denis M, et al
. The South London and Maudsley NHS Foundation Trust Biomedical Research Centre (SLAM BRC) case register: Development and descriptive data. BMC Psychiatry 2009;9:51.
Bock C, Bukh JD, Vinberg M, Gether U, Kessing LV. Validity of the diagnosis of a single depressive episode in a case register. Clin Pract Epidemiol Ment Health 2009;5:4.
Malhotra S, Biswas P, Sharan P, Grover S. Characteristics of patients visiting the child and adolescent psychiatric clinic: A 26-year study from North India. J Indian Assoc Child Adolesc Ment Health 2007;3:53-60.
Chengappa KN, Kupfer DJ, Frank E, Houck PR, Grochocinski VJ, Cluss PA, et al
. Relationship of birth cohort and early age at onset of illness in a bipolar disorder case registry. Am J Psychiatry 2003;160:1636-42.
Dembling BP, Chen DT, Vachon L. Life expectancy and causes of death in a population treated for serious mental illness. Psychiatr Serv 1999;50:1036-42.
Garre-Olmo J, Flaqué M, Gich J, Pulido TO, Turbau J, Vallmajo N, et al
. Registry of Dementia of Girona Study Group (ReDeGi Group). A clinical registry of dementia based on the principle of epidemiological surveillance. BMC Neurol 2009;9:5.
Kendler KS, Karkowski LM, Prescott CA. Causal relationship between stressful life events and the Onset of major depression. Am J Psychiatry 1999;156:837-41.
Byrne M, Agerbo E, Mortensen PB. Family history of psychiatric disorders and age at first contact in schizophrenia: An epidemiological study. Br J Psychiatry 2002;181(suppl 43):s19-25.
Nordentoft M, Mortensen PB, Pedersen CB. Absolute risk of suicide after first hospital contact in mental disorder. Arch Gen Psychiatry 2011;68:1058-64.
Kessing LV, Andersen PK. Does the risk of developing dementia increase with the number of episodes in patients with depressive disorder and in patients with bipolar disorder? J Neurol Neurosurg Psychiatry 2004;75:1662-6.
Koenen KC, Hitsman B, Lyons MJ, Niaura R, McCaffery J, Goldberg J, et al
. A twin registry study of the relationship between posttraumatic stress disorder and nicotine dependence in men. Arch Gen Psychiatry 2005;62:1258-65.
Elklit A, Shevlin M. Female sexual victimization predicts psychosis: A case-control study based on the Danish Registry System. Schizophr Bull 2011;37:1305-10.
Chee KY, Dain NA, Aziz SA, Abdullah AA. Duration of untreated psychosis, ethnicity, educational level, and gender in a multiethnic South-East Asian country: Report from Malaysia schizophrenia registry. Asia-Pacific Psychiatry 2010:248-54.
Hjerl K, Andersen EW, Keiding N, Sawitz A, Olsen JH, Mortensen PB, et al
. Breast cancer risk among women with psychiatric admission with affective or neurotic disorders: A nationwide cohort study in Denmark. Br J Cancer 1999;81:907-11.
Brommelhoff JA, Gatz M, Johansson B, McArdle JJ, Fratiglioni L, Pedersen NL. Depression as a risk factor or prodomal feature for dementia? Findings in a population-based sample of swedish twins. Psychol Aging 2009;24:373-84.
Kendler KS, Gardner CO, Fiske A, Gatz M. Major depression and coronary artery disease in the swedish twin registry: Phenotypic, genetic, and environmental sources of comorbidity. Arch Gen Psychiatry 2009;66:857-63.
Chengappa KN, Levine J, Gershon S, Kupfer DJ. Lifetime prevalence of substance or alcohol abuse and dependence among subjects with bipolar I and II disorders in a voluntary registry. Bipolar Disord 2000;2:191-5.
Zonana HV, Wells JA, Getz MA, Buchanan J. Part I: The NGRl Registry: Initial analyses of data collected on connecticut insanity acquittees. Bull Am Acad Psychiatry Law 1990;18:115-28.
Zonana HV, Bartel RL, Wells JA, Buchanan JA, Getz MA. Part II: Sex differences in persons found not guilty by reason of insanity: Analysis of data from the connecticut NGRI registry. Bull Am Acad Psychiatry Law 1990;18:129-42.
Zatzick DF, Kang S, Kim SY, Leigh P, Kravitz R, Drake C, et al
. Patients with recognized psychiatric disorders in trauma surgery: Incidence, inpatient length of stay, and cost. J Trauma 2000;49:487-95.
Rabinowitz J, Fennig S. Differences in age of first hospitalization for schizophrenia among immigrants and nonimmigrants in a national case registry. Schizophr Bull 2002;28:491-9.
Kupfer DJ, Frank E, Grochocinski VJ, Houck PR, Brown C. African-American participants in a bipolar disorder registry: Clinical and treatment characteristics. Bipolar Disord 2005;7:82-8.
Sullivan PF, Prescott CA, Kendler KS. The subtypes of major depression in a twin registry. J Affect Disord 2002;68:273-84.
Erlangsena A, Agerboa E, Hawton K, Conwell Y. Early discontinuation of antidepressant treatment and suicide risk among persons aged 50 and over: A population-based register study. J Affect Disord 2009;119:194-9.
Nielsen J, Skadhede S, Correll CU. Antipsychotics associated with the development of type 2 diabetes in antipsychotic-naý¨ve schizophrenia patients. Neuropsychopharmacology 2010;35:1997-2004.
Dalton SO, Johansen C, Poulsen AH, Nørgaard M, Sørensen HT, McLaughlin JK, et al
. Cancer risk among users of neuroleptic medication: A population-based cohort study. Br J Cancer 2006;95:934-9.
Bramness JG, Skurtveit S, Neutel CI, Mørland J, Engeland A. Minor increase in risk of road traffic accidents after prescriptions of antidepressants: A study of population registry data in norway. J Clin Psychiatry 2008;69:1099-103.
Claussen T, Ancheresen K, Waal H. Mortality prior to, during and after opioid maintenance treatment (OMT): A national prospective cross-registry study. Drug Alcohol Depend 2008;94:151-7.
Chee KY, Dain NA, Aziz SA, Mokhtar SS, Junus MM, Zam RZ, et al
. Outcomes of patients with first-episode schizophrenia at one-year follow-up: Findings from the National Mental Health Registry in Malaysia. Asia Pacific Psychiatry 2012;4:30-9.