STRONG HEART STUDY Cardiovascular in American Indians

NEWSLETTER January 1990 Volume 2, Number 1

ADVERSE CONDITIONS TAKEN IN STRIDE

In spite of the holidays, flu and bad weather in enhance response rates and record review so November and December, the pace of that the Strong Heart Study meets or exceeds examinations stayed surprisingly strong. As of its goal in all three centers. early January, 961 examinations had been completed including 307 in , 300 in the In November, the investigators took advantage Dakotas and 354 in . All centers will of the in American Indians and continue to do exams throughout the winter Alaska Native meeting site to include a site because of the need to meet the study goals of visit of the Salt River Indian Community. The 1500 exams in each center and to complete the site visit team not only saw a well run morbidity and mortality follow-up by March examination process (which saw five 1991. Centers have developed various participants that morning) but also met two of strategies to meet these goals due to the unique the American Indian students, Rosinna Stewart constraining factors at each center. For and Roberta Seepie, funded under a example, the Dakota center is most affected by supplemental grant program by NHLBI to t.he winter weather and has adjusted clinic provide minority students with experience in a operations. It intends to devote more resources research study. It is clear that the Strong Heart to morbidity and mortality review during the Study as well as the students benefit from this winter months in North Dakota. Examinations program. will continue in the South Dakota clinics. In Arizona, examination rates were projected to In January 9-12, site visits were completed at be lower in the summer and higher in the Eagle Butte and Kyle, South Dakota and in winter as more adults are targeted for Anadarko and Lawton, Oklahoma. The examination by the NIDDK study in the Gila committee was pleased at the level of River Indian Community. In Oklahoma more performance at each of these clinics. Confidence participants use non-IHS medical facilities and in the study protocol and procedures is much special efforts are being made to access these improved and fewer inconsistencies were noted. records. It is important that each center One important note for each member of the recognize special opportunities to maintain and SHS team: You should have a Manual dated 8/28/89 and revised (see page 35) on 10/2/89.

THE STRONG HEART STUDY GAINS RECOGNITION

In November the Principal Investigators and innovative structure of the agenda. Of special the Project Manager for the Strong Heart value to the Strong Heart Study was the Study were invited to participate in a program opportunity to present the progress of our sponsored by the Indian Health Service and the study to an ideal audience and the opportunity National Institute of Diabetes and Digestive to discuss study conduct and collaborative and Kidney entitled "Diabetes in efforts with individuals from relevant American Indians and Alaska Natives". The populations and organizations. we congratulate meeting was highly successful because of the Dr. Dorothy Gohdes (IHS) and Dr. Peter mix of participants, that included Bennett (NIDDK) for an excellent meeting and representatives of the American Indian thank them for their supportive comments community and scientists active in studies of concerning the Strong Heart Study. American Indians, and because of the 1 WHAT IS NHLBI?

The National Heart, Lung, and Blood Institute Applications. It is this last division that (NHLBI) should be familiar to readers of includes the Clinical and Genetic Epidemiology previous newsletters as the funding source for Branch and is the specific source for funds for the Strong Heart Study. However, what does the Strong Heart Study. not seem clear is what is NHLBI, how does it fit in the structure of the federal government NHLBI has a budget of slightly more than one and, specifically, how does it relate to the billion dollars, most of which is used to fund Indian Health Service? research proposed by biomedical scientists throughout, and occasionally outside, the NHLBI is one of twelve Institutes in the United States. Included in the programs funded National Institutes of Health (NIH). Examples by NHLBI are studies of the distribution of of other Institutes include the National diseases in the population such as the Strong Institutes of Aging, , Dental Research, Heart Study and the , and Diabetes and Digestive and Kidney studies of the effectiveness of drugs to treat Diseases (NIDDK). NIH is one of several high blood pressure and high , and agencies under the Public Health Service which, research into the development of an artificial in turn, is part of the Department of Health heart. and Human Services. The Indian Health Service is also under the Public Health Service While NHLBI initiated and funded the Strong and has agency status equivalent to NIH. The Heart Study, other government agencies are IHS is responsible for providing comprehensive providing support that greatly enhances the health services to American Indian and Alaska chances of success for this study. Cooperation Native people. NIH and the specific Institutes provided by IHS includes access to medical are charged with promoting research on the records for the morbidity survey, access to causes and treatment of various diseases. More clinic space for the examinations and limited simply, IHS funds health care delivery and NIH support for personnel. NIDDK staff in the funds medical research. Phoenix area have worked closely with the Strong Heart Study personnel to merge the NHLBI has four divisions: Heart and Vascular examination with ongoing studies to minimize Diseases, Lung Diseases, Blood Diseases and the burden on local participants. This study Resources, and Epidemiology and Clinical clearly demonstrates the value of federal agency cooperation.

THE SALT RIVER CLINIC PARTICIPATES IN STRONG HEART STUDY

The Salt River Indian Community (SRIC) is The Strong Heart Study staff is located in the one of two Pima/Maricopa Indian communities ground floor of the Health Center, next to the in Arizona which has participated in the Strong Pharmacy. Heart Study since its beginning in May of 1989. The Salt River Indian Reservation, Betty Jarvis, R.N., Project Coordinator, has approximately 52,000 acres of area, is many years of research experience. She worked immediately adjacent to Scottsdale, Arizona on with the CDC conducting studies on the the east side. A rapidly growing area, it Epidemiology of Infectious Diseases in Child contains the Pima cotton fields, a new Care Centers. Before assuming the job with shopping center, and the campus of the the Strong Heart Study, she was with the Scottsdale Community College. Maricopa County Health Departments in the Department of Public Health as the Program The Strong Heart Study conducts physical Coordinator for immunizations. She was examinations every Wednesday at the involved in a multinational project on Community Health facility for the giardiasis in young children. She still functions Pima/Maricopa Indian Community. The new as a consultant for major child care policy medical facility, which was opened officially on issues in the State of Arizona. She has done a August 31, 1989, houses the Health and Human outstanding job organizing the Strong Heart Services Administration and the clinics. Study and establishing the clinic in the SRIC. 2 Paula Harper, R.N., has also been with the blood samples, assists in scheduling, and enters Strong Heart Study since its beginning. She data in the computer. She has been an has much clinical nursing experience centering enthusiastic contributor to the Strong Heart on trauma, emergency medicine, and diabetes. Study, and has exhibited an aptitude and She is a certified diabetes educator. Before interest in research. joining the Strong Heart Study she worked with CIGNA, a large health maintenance Roberta Seepie is our other student research organization in the Phoenix area. Paula is the assistant (also see Newsletter, October 1989). founder and director of the International She also works for the WIC program in the Diabetic Athletes Association, and works to Salt River Community Center, and before that promote exercise and athletic participation she was a Head Start teacher. For the Strong among diabetics around the world. Paula has Heart Study she edits all the forms and has been especially valuable in diabetes education developed and edited the population list of the among the Strong Heart Study Participants. SRIC members eligible for the Strong Heart Study. Her work has been of a high quality, A. Wayne Santo, a resident and a member of and her exactness in editing forms has the SRIC, is the recruiter and driver for the especially pleased the Coordinating Center. project, and also performs the personal interview on all SRIC participants. Before In addition to the regular staff, many other joining the Strong Heart Study he worked for people have contributed to the effort to the the SRIC Housing Authority. He was in the SRIC, including Mrs. Alfretta Antone, Vice U.S. Marine Corps for 3-1 /2 years stationed at Chairman of the SRIC, Bev Warne, Supervisor Camp Pendleton. He has made an especially of the Community Health Nurses, Steve valuable contribution to establishing the Strong Thompson, Nurse Practitioner at the Salt Heart Study among the SRIC and its residents River Clinic. Eddie Smith, M.D., Medical and the outstanding record of participation has Director of the Salt River Clinic, Vicki Clark, a been largely due to his efforts. Nurse Practitioner at the SRIC, and Frank Mertly, Community Manager, who supervised Rosinna Stewart is a student research assistant the construction of the clinic facility. Other (See article on Student Assistants in Newsletter support people include Sherilla Mckinley, the of October 1989). She previously worked at Health Educator, Judy Fulwilder, Nutritionist, Scottsdale Memorial, hospital. She administers Carmalita Estenson, a Nurse on the Summer the physical activity questionnaire, prepares Co-step Program, and Allison Drash, a Summer Student.

THE COORDINATING CENTER - BUZZING WITH EXCITEMENT

The Coordinating Center has been buzzing excellent computer facilities. A powerful with excitement ever since the Strong Heart scientific word processor, EXP, was used to Study was funded, long before the staff at each generate the study manual, data forms, examination center started to work. They have brochure and newsletters. SAS /FSP, as the compiled the information sent from the database management system, combines the Steering Committee and produced the 400-page convenience of interactive, full-screen facilities study manual. They have also generated the for data entry, editing and retrieval with Study brochure, the quarterly newsletters, and programming capabilities of SAS software. the data forms. It is estimated that more than Andy Cucchiara, a Ph.D. in biostatistics, is a quarter of a million pages of paper has been currently installing UNIX on the Strong Heart used to generate these works. Study computers. UNIX will enhance computer access by allowing several people to The Coordinating Center is currently use the same computer simultaneously. proceeding with its most important task, namely managing and analyzing the vast The strength of the Coordinating Center lies in amount of data reveived from the examination the quality and experience of its staff. centers, the Core Lab and the ECG Center. Jeunliang Yeh, who received his Ph.D. in epidemiology m 1989, coordinates all the The Coordinating Center is fortunate to have 3 Coordinating Center and SIIS staff: Left to Right - Front - Rachel Fiedler Ronald Tso Back - Dr. J. L. Yeh Sherry Jackson Dr. A. Cucchiara Lela Brown ~Dr. E. T. Lee . jf~

activities of the Coordinating Center. Yeh (as quality data collection forms. Ms. Fiedler, he prefers to be called) reviews all the data originally from Singapore, lives in Norman, forms from the three examination centers and Oklahoma with her husband, a professor of acts as a troubleshooter. He reports all the meteorology at the University of Oklahoma. missing and questionable data, duplicated lab results, or any other inconsistencies to the All the data received by the Coordinating respective examination center, Core Lab or Centers, are entered into the computer by ECG Center. He also ensures that all the Sherry Jackson. Ms. Jackson has been working requested analyses are properly performed. with computers for six years. To minimize data entry errors, the data are verified by Lela Brown, an experienced statistician with an Ronald Tso and LaRose Lucero, both graduate M.S. degree, has worked at the Federal student assistants (see October 1989 issue of Aviation Administration as a health Newsletter). statistician for 3 years and as a statistical analyst for the State of Oklahoma for 2 years The Coordinating Center appreciates the efforts before joining the Study. Ms. Brown, serving of all the field staff to improve the data as Data Manager for the Study, has built the quality. Together we can make the Strong entire database using SAS/FSP for all the data Heart Study a significant contribution to the collected in the Study. The database consists epidemiology of . of more than 60 files for the mortality survey, morbidity study and clinical examinations. In ADDENDUM addition, Ms. Brown is responsible for quality control of all the data the Coordinating Center The following two students also worked at the enters as well as for performing statistical Dakota clinics: Lakota Kruse, M.D., graduate analysis for the Study. Ms. Brown, a native of of the University of Pennsylvania School of Oklahoma, plans to pursue a doctoral degree in Medicine and member of the Omaha Tribe and biostatistics. Vince Whipple, a Harvard pre-medical student and member of the Cheyenne River Sioux Rachel Fiedler, together with Ms. Brown and Tribe. Dr. Kruse worked at Ft. Totten. Mr. Yeh, worked on the study manual and set up Whipple worked at Rapid City and plans to the format for all the study forms. An return next summer to the project. Gregory excellent programmer, Ms. Fiedler made an Cost was misspelled as Coat in the last issue. important contribution in producing the Veronica Williams is a Jicarilla Apache not a newsletters, the study manual and all the high Turtle Mountain Chippewa. 4